tag:blogger.com,1999:blog-89563517987527518092024-02-02T01:50:06.085-08:00The Hank ChroniclesOn October 16, 2008, our then 7 year old son was diagnosed with Parry Romberg Syndrome: an extremely rare, progressive, "incurable" auto-immune disease that causes facial atrophy...meaning it causes half the face to "waste" away. Some cases include seizures, strokes or other neurological problems. This is the story of our family, and specifically our son, Hank, as we struggle with diagnosis, search for a cause and a cure and go to the ends of the earth for treatment.Terrihttp://www.blogger.com/profile/03013764786276300558noreply@blogger.comBlogger83125tag:blogger.com,1999:blog-8956351798752751809.post-78710595956207358892017-06-12T21:15:00.000-07:002017-06-14T21:25:06.911-07:00Leading up to Surgery #7 in Seattle<div class="separator" style="clear: both; text-align: center;">
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We are in Seattle, and Hank is scheduled for surgery tomorrow. I'm not ready, it came too fast! I haven't updated this blog in a long time...we have an Internet stalker, who will probably reappear now...but I am taking my chances. <br />
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A little background... Hank had surgery last summer for a tissue revision. The goal was to move the tissue in his cheek up to mimic a cheekbone and support his eye. We knew at the time that Hank would need bone surgery, but were trying to buy some time. Because Hank was so young when his Parry Romberg started, his bones did not grow properly. But we weren't ready to commit to, in my mind, "dreaded bone surgery". Unfortunately, the surgery did not have the desired result as gravity was too much for the depressed bone.<br />
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One night in October, I stood with Hank in his room, as he got ready for a school dance. He was looking in the mirror and reached up and touched his cheek. "I think it's time for the bone surgery," he said. "It's time." And with those words, I reached out to his doctor, who referred us to a colleague in Seattle. (Dr. Siebert has been Hank's surgeon since 2008, but specializes in muscle and tissue...not bone.)<br />
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A month later, Hank and I found ourselves at Seattle Children's Hospital in the Craniofacial Clinic, meeting with a new team of surgeons. After 8 years of me leading the charge for Hank's healthcare, I found myself taking a backseat as the conversation took place between the surgeon and Hank. I was just there to fill in surgery dates. Hank was articulate and spoke of why exactly we were there. Together, the two of them and the rest of the surgical team came up with a plan! I was so proud of Hank! Age 15, with a full understanding of what needed to be done! <br />
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In Madison, we were blessed to stay at the Ronald McDonald House during our stay for three surgeries. We were not able to get into the Seattle house, as Seattle is a big cancer center and the RMDH is full. On Sunday, we started the day at a beautiful old church, "Church of the Blessed Sacrament", where we went to mass and then asked the priest to bless Hank for his surgery. After a beautiful blessing, we headed out to Pike's Market where we immersed ourselves in everything from hat shopping to seafood eating to watching the fish throwing and more. And after numerous trips to Target, we found all the supplies we needed to make our stay here as comfortable as possible. We are staying at a<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEji9eTCNn9fdn7BR1bXrCFYCAfeZlsNjNKvGcMd00AOnk_FoyXtYw46Iq34CQOHLyYwdwvON_0PaSvi-JJujKdb1vxwi0WI0EbHvv8ff8ReoVnh8aW_dBvMWhRXEuFx3OwvXxyyvrzhLCzC/s1600/Woody.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"></a> cute vacation rental by owner (VRBO), which is the bottom floor of a three story house. I love the house...it is craftsman/bungalow style with beautiful finishes and an amazing garden! Added bonus is "Woody", the 3 month old Jack Russell Terrier that lives upstairs. The kids are in heaven!<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEguf9JOJMQG2ufvtY1aLWJhM4K7w8gxaM27Rt3aatnprF5n5ck9zVOY_xJahfjYnP_c_BEjeTCqrPbU6QUfyYieAe16jg2vRC590l4Y0bwnwKrDyChoKASHS5NvfTtV6ggo1GBlWal9X3Ws/s1600/Seattle+Collage.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEji9eTCNn9fdn7BR1bXrCFYCAfeZlsNjNKvGcMd00AOnk_FoyXtYw46Iq34CQOHLyYwdwvON_0PaSvi-JJujKdb1vxwi0WI0EbHvv8ff8ReoVnh8aW_dBvMWhRXEuFx3OwvXxyyvrzhLCzC/s1600/Woody.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"></a>Today was Pre-Op day. Hank had three appointments with his surgeon, Dr. Hopper and the surgical team, with the social worker, anesthesiologist and the photographer. He was weighed, measured, and all the procedures were explained fully. Hank shared his concerns and all questions were answered. The only unhappy thing for us was being told the whole family would not be able to wait with Hank in pre-surgery and none of us would see him in recovery. To come all this way together and to go through 6 surgeries as a close knit group, this was new...unexpected...and not what we hoped for. It also looked like I would not be able to accompany Hank to the OR, as I have for all the other surgeries. "It's OK, Mom, I'll be OK", Hank told me, when I saw the look of disappointment on my face. So brave...braver than I...and I'm sure he really is OK with it...but I'm not...I want to be there...just to see everything and to hold his hand...or maybe he is holding MY hand...<br />
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So with all appointments done...we went out and had burgers and fries and all things comforting. The next day was going to be stressful...and all I wanted to do was gather this little family together and hide away for the night. Which is exactly what we are doing. Tomorrow will be amazing...a new adventure...a new journey for Hank. Hank is getting his cheekbone back. A step in repairing what this awful disease has done. But I love his face now. I love his smile and his shining eyes! I know he needs this. He needs to support that eye...but I don't ever want him to think he needs to look better...he is handsome from the inside out. But medically, he needs this and ultimately it was his decision to move forward with this. I am proud of this boy, and can't wait for this to be done so he can get on with life!<br />
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First night in Seattle!</div>
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<span style="font-family: Georgia, "Times New Roman", serif; font-size: medium;">Blessed Sacrament Church:</span><br />
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<span style="font-family: Georgia, "Times New Roman", serif; font-size: medium;">Pike's Place Market:</span> </div>
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The Troll Under the Bridge:<br />
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Pre-Op at Seattle Children's Hospital<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgmL6tHNtcLjQ2a-cRjbsbQZ997RB7jO1zuDPD-H44x5zhf0k8mF28G8ou991euJnUjsgX7WdaE4-Hu_4ZR57mFjtH23xz5l6AQeG3AW6OG-dtwMA7X0GykIHPjs4w-ZIevLec84yheUVxW/s1600/Surgical+team.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="720" data-original-width="960" height="480" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgmL6tHNtcLjQ2a-cRjbsbQZ997RB7jO1zuDPD-H44x5zhf0k8mF28G8ou991euJnUjsgX7WdaE4-Hu_4ZR57mFjtH23xz5l6AQeG3AW6OG-dtwMA7X0GykIHPjs4w-ZIevLec84yheUVxW/s640/Surgical+team.jpg" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Hank with Dr. Hopper and the Craniofacial Surgical Team</td></tr>
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The weight of the world...<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhHOHbnhWBrij-WTacyoDg3PpzUx7_7mIJh08YJpCJmBseU3MZ7BNAlpQucKWjQmiVC9K9VLdpyVuO4DnPB7oC_nn2znTbA0B7kFgam6SuakzUWgSURFqnMYza3-fecjyxNK80RLhUeSc_4/s1600/Pensive+Hank.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="960" data-original-width="960" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhHOHbnhWBrij-WTacyoDg3PpzUx7_7mIJh08YJpCJmBseU3MZ7BNAlpQucKWjQmiVC9K9VLdpyVuO4DnPB7oC_nn2znTbA0B7kFgam6SuakzUWgSURFqnMYza3-fecjyxNK80RLhUeSc_4/s640/Pensive+Hank.jpg" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">In the days leading up to surgery, there were many times I would catch him like this. He has a lot on his mind.</td></tr>
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Terrihttp://www.blogger.com/profile/03013764786276300558noreply@blogger.com0Seattle, WA, USA47.6062095 -122.332070847.2636695 -122.9775178 47.9487495 -121.68662379999999tag:blogger.com,1999:blog-8956351798752751809.post-41366289765591743412015-05-13T15:46:00.000-07:002015-05-23T15:51:29.320-07:00Day 5 Part Two: Recovery and Blessings<div class="separator" style="clear: both; text-align: center;">
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Day 5 Part Two: Hank's Miraculous Recovery<br />
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Hank has been sick and now it's time to nurse him back to health. After leaving the domain because of chest pains, and now battling dehydration, we were back in the room resting. Hank was drinking water and Sprite as we quietly reflected on our pilgrimage so far. Sitting on my bed, with Hank laying in his...I asked Hank, "What do you think of this trip?" He laid back and thought..."I miss home a little bit," he revealed, "But I am not ready to leave Lourdes." I told him I felt the same way. It wasn't until we got home and I had time to really absorb everything about the trip, that I realized those words held more meaning than I could have imagined at the time...<br />
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<tr><td class="tr-caption" style="text-align: center;">Convent of the Poor Clare's</td></tr>
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With Hank wanting to sleep, I pulled curtains and darkened the room. While he slept, I pulled out my tablet to try to get online. With no luck, I journaled more of our trip and then slept too. Hours later, we both awoke...Hank was looking better and drank more water. Wanting to sit up and read, I asked if he would be OK if I ran over to the cafe to get online. With his blessing, I quickly set out to find WiFi access. I should mention that I did get out earlier in the day, after lunch with Christine and Dr. Jim, who took me shopping for souvenirs and Order of Malta swag! We went up to the Convent of the Poor Clare's and I was able to purchase rosaries and medals to bring home. Dr. Jim reminds me of my own Uncle Jim, the same wit and dry sense of humor...and I am pretty sure they both feel the same about shopping! But even so, he patiently put up with my need to look in almost every store!<br />
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At dinner time, I ran down to the dining room and brought soup back for Hank, not really liking it, he settled for bread, and pastries. While he ate and played on his phone, I went back to the dining room for a quick meal. Dr. Jim and Christine were downstairs and asked if we would like to go somewhere. I told them that Hank and I had talked about going to the grotto since we missed it earlier in the day, but I wasn't sure if Hank was up to it.<br />
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When I returned to the room, Hank was awake and looking great! I asked if he wanted to get out of the room and go to the grotto. He said yes, and got dressed. Joined by Dr. Jim and Christine downstairs, we started our walk. It was just getting to twilight and crowds were already filling up the Domain for the nightly rosary procession. Instead of walking across the concourse, we took the ramp up to the upper level of the Rosary Basilica. (We would be taking part in the procession the following night)<br />
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<tr><td class="tr-caption" style="text-align: center;">Looking over their shoulders at the start of the procession below.</td></tr>
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There were people lining the edges, looking down at the crowd below, and as we made our way up, the voices of the pilgrims reciting the Rosary en mass, gave me goosebumps. Standing at the top of the square, we squeezed between the others, to get a better look. Below us were hundreds of people holding candles, and walking the length of Rosary Square and back. Following behind a statue of Our Lady of Lourdes, carried on the shoulders of 6 strong men. The Rosary was being said in Italian, with every few "Hail Mary's" being said in another language. At the end of each decade (one Our Father, 10 Hail Mary's and a Glory Be), the choir would lead the crowd in song. I rejoiced as I heard the strains of "Immaculate Mary" sung by so many and joining in with them, my breath caught as they raised their candles high in the air each time they sang, "Ave! Ave! Ave Maria!". I found myself in tears at the beauty of faith before me. I looked at Christine, who also had tears in her eyes. "I am in tears every time I see it," she later told me.<br />
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I did not want to tear myself away, but we wanted to get to the Grotto before the crowd below us dispersed and joined us there. Walking down the ramp, I joined in the Rosary with those below, and <br />
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realized all those around me, where doing the same. A few minutes later, we took our place in line, to walk through the Grotto. The feeling here was different. Even though we could still hear the voices and the music, it all seemed so distant. As if a heavy cloak were draped around us, enveloping us in a warm embrace. The line moved quickly and quietly, and as we edged closer, I once again was overcome with great love and emotion. This had a much different feel this time. It was more personal...(just writing about it now, I am once again in tears) The spring that Bernadette dug, which feeds the baths, was clear through the plexi-glass; rushing over the rocks, as it has done since 1858. We continued our slow walk through, each in our own silent prayer. As we came out and walked under the spot where Our Lady appeared (and a statue of her stands today), I paused and turned to her. Radiant in the light, and so clearly visible against the dark of the grotto, I saw her as St. Bernadette saw her all those years ago. "A lady dressed in white with a blue sash and a rosary. A yellow rose was on both of her feet."<br />
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<tr><td class="tr-caption" style="text-align: center;">Lighting Candles</td></tr>
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We left this part of the grotto and continued towards the baths, where numerous candles are set up. All sizes are there...some which can burn for a month. Jim and Christine generously purchased candles for Hank and I to light. We each took our candle and searched for a place to put it. There are numerous "boxes" which hold a multitude of candles...just finding empty spots was the trick. We found somewhere to place them and lit our candles. I placed mine in and stepped back to say a prayer. Hank went next, lighting his candle and doing the same. I caught his face in the candlelight...reflective and prayerful, and something else. "Something is different", I thought to myself. Something that I didn't know but felt...<br />
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We walked back by the Grotto, pausing to stand back and take it all in. The lights shining on the statue, the illuminated spring, the long line of pilgrims waiting to walk through, the people filling up all the benches facing the Grotto. The crowds of people, like us...just soaking it in. And the many people...kneeling on the concrete...in groups of two...or just individuals, with their heads in their hands, prostrating themselves before the Virgin Mary. So much love here...so much devotion...so much emotion...so much peace. And all of it...in silence...<br />
The draw of the Grotto was strong for both Hank and I ...and we would continue to go back again and again, during our trip.<br />
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We slowly walked back through the domain, where the crowds were now sparse, and made our way through the streets of Lourdes and back to our hotel. "Thank you Hank," I said as we walked, "I know you did this for me." He smiled slightly, "Yeah...I know you really wanted to go to the Grotto, Mom" he said. Here was this boy...so sick just hours before...and making this sacrifice for me... We said goodnight to Jim and Christine, thanking them for taking us out. Hank and I made our way up to our room...and I thanked Hank again for going. He looked at me out of the corner of his eye and draped his arm around my shoulders..."I wanted to go too..."<br />
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*up next: Mass in the underground basilica, the teen retreat, candlelight procession...oh and machine guns...!<br />
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<tr><td class="tr-caption" style="text-align: center;">View of the Rosary Procession from above.</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">The spring in the grotto</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">The Grotto at night</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Candles between the grotto and the baths.</td></tr>
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Terrihttp://www.blogger.com/profile/03013764786276300558noreply@blogger.com1tag:blogger.com,1999:blog-8956351798752751809.post-73135241514340486402015-05-07T11:07:00.000-07:002015-05-23T09:19:07.496-07:00Day 5 Part One: In Lourdes and Hank is Sick!Day 5 Part One: Saturday May 2, 2015: Illness, Medals and Adoration<br />
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Hank is sick and it has gone from bad to worse. Somewhere around 1:00 am, Hank woke up and made a mad dash for the bathroom. An intestinal bug had taken hold and he was in a bad way. I didn't think there was anything left...and yet he continued to be sick. He finally laid down, groaning in pain. I was at a loss with nothing to give him. No Internet...no cell service...it's the middle of the night and I am here in France and I just want to call home. (It's only 4 pm there, after all...)<br />
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"Hank, I only have water for you...maybe I should go get the doctor," I said. "Yes! Call the doctor, Mom!" Hank moaned. That was all I needed to hear...no kid wants the doctor...<br />
Luckily, the Order of Malta has a huge medical team, with doctors on each floor. I went out into the hallway to look for help. I stood outside the door marked "Medical"...and then stood outside the door marked "Emergency". "Which door do I knock on?" Maybe I should check to see who is in each room. There was a list of names and room numbers inside the elevator, so I pushed the button and waited. Inside the elevator, I quickly scanned the names...I tried to be quick as I did not want the elevator moving and risk being caught in my Spongebob pajama pants...(Why did I bring Spongebob pajamas to Lourdes?) The doors to the elevator don't stay open by pushing the door open button, but rather by an electronic eye at knee level. I stood in the elevator, swinging my leg to keep it open...realizing that whoever is manning the security camera was getting an entertaining show...It was too hard to read and keep the doors open...I abandoned the elevator and ran back to the room to get dressed. "Did you bring the doctor?" Hank muttered. "Not yet...on my way to get him," I replied.<br />
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Dressed is sweats, I headed down to the bar with the intention of asking if anyone was a doctor...that way I wouldn't be waking anyone up. I saw our assistant team captain, Katherine, and headed straight for her. She saw me coming and stood up...the minute we made eye contact, I broke into tears. "What's wrong?" she asked with a worried expression. "It's Hank..." I sobbed, "he is sick...throwing up...and more." (I have no idea why I was crying...all I can compare it to is seeing your mom and crying in relief) Katherine took charge with a "let's go get the doctor" and up we went. She went right up to the door marked "Medical" and knocked on the door. An almost immediate response as the door opened and the doctor stood there. "Sorry to bother you...we have a sick Malade..." He invited us in and I told him Hank's symptoms. He gave me Imodium, something for nausea and pain. "Give him this now and another if he gets sick again," he directed. Quick and professional, I felt more confident immediately. <br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj3WNQS1rnARyIrQ6tkgbe_m6qvDM8f_2SBFmjRADqSyc-fiRuS-Z6Z2klRhAy3ZDs_HnY706g37zwAa-Hw_Rwu57fMiu7lCeQ1vONUCAcgoHKjuQl6LgK_TEB1ZoC5Xx1W5FOweu1du7k3/s1600/water+bottle+1.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj3WNQS1rnARyIrQ6tkgbe_m6qvDM8f_2SBFmjRADqSyc-fiRuS-Z6Z2klRhAy3ZDs_HnY706g37zwAa-Hw_Rwu57fMiu7lCeQ1vONUCAcgoHKjuQl6LgK_TEB1ZoC5Xx1W5FOweu1du7k3/s320/water+bottle+1.jpg" width="234" /></a><br />
Back in the room, Hank was once again asleep. I went into the <br />
bathroom and cleaned it up in preparation for his next bout. I laid down in bed knowing that there probably would be no sleeping. At 4 am he was up again and heading for the bathroom. I got out the medicine and grabbed a water bottle...and then I saw it...the small plastic water bottle with a picture of Our Lady of Lourdes on it. It was left here for us when we got in our room on Wednesday. I opened the Lourdes water and poured it into a glass. "Here Hank...this will make you feel better." He took the pills and finished the water, laying down and falling back to sleep. He woke up at 7 am feeling better, and I headed to breakfast in search of something he could eat. Crackers? Soup? Something light... I was worried about dehydration...we were already 1,000 ft above sea level and were told to stay hydrated...<br />
<br />
Downstairs, I ran into Maura, the wonderful nurse for the Red Team. "How is Hank?" she asked. I filled her in on the night's events. "He needs ginger ale...I will go find some." And with that, she was off. As I quickly grabbed some food for myself and sat down with the Burkart family, John B. asked, "Where is Hank?" I explained the situation and told him that I needed to head to the grotto for more Lourdes water. "I'll go!" he said and quickly jumped up. And with that...he was off. Numerous others now started to inquire about Hank as word spread quickly. Soon, I was armed with a liter of Lourdes water, an armful of Sprite (ginger ale could not be located) and a french roll. I headed back upstairs to see the patient as the rest of the pilgrimage got ready to head to the grotto for morning Mass. (I should add that a few of our party offered to stay with Hank and let me go to mass, but I knew where my heart was and if I were sick and age 13, I would want my mom...)<br />
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Hank was awake when I got there and still looking gray. "Are you hungry?" I asked. He shook his head. I poured a glass of Lourdes water and gave him his medicine. I asked how he was feeling and he said, "better" but not great. Our voiture team (French for "cart") Dr. Jim and Christine, stopped by to see how we were. (Dr. Jim had taken care of my bout with the flu) I assured them that we would be fine and they said they would check on us when they got back. After talking for a few minutes, I shut the curtains and let him sleep, as I tried in vain to get an Internet connection. I was very disappointed that we were not at the Grotto Mass. To be in that holy spot with the holy Eucharist...but I could see it was not to be...<br />
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<tr><td class="tr-caption" style="text-align: center;">Malade and Companion Medals</td></tr>
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The next event was not supposed to take place until 11:45am, when everyone would head to the Salle<br />
Notre Dame, where malades and companions would receive their medals. This was a big deal. The Grand Master of the Order of Malta, Fra' Matthew Festing, would be arriving and handing out the medals. Something I knew we didn't want to miss...but it would depend on Hank's illness. (or lack of illness!) Hank woke up feeling better and said he wanted to go. He took a quick shower and I let our cart pullers know that we would be there. Hank and I headed out the front door of the hotel where our cart team had assembled. Everyone else had gone from the grotto to the site and we were the only ones at the hotel. With Hank situated, away we went at a fast clip to get there in time. Down the street, across the Domain and to the hall. As we rounded the corner of the building, all the voitures were parked and all the malades and companions were inside. But our red team leaders were out front and cheered when they saw Hank. "You made it, Hank!" they cheered. Bishop Soto came over and asked, "How are you doing Hank? Glad you made it!" Hank mumbled a response and I shot Bishop Soto a grateful look.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj6kCTuWGkQaBHMv3GHu3RYxFJYbdfvNWtLXJaZc7jW-5Fs_MiVu6kxVoSLK0qQoj5r-Dex6LRxqnXavD34EZa-LcKVlSFgyond8BHxQIXDvLhZ09tkWqKDzUaDz2TG3EyTFnaFdNKsy35d/s1600/IMG_7039.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj6kCTuWGkQaBHMv3GHu3RYxFJYbdfvNWtLXJaZc7jW-5Fs_MiVu6kxVoSLK0qQoj5r-Dex6LRxqnXavD34EZa-LcKVlSFgyond8BHxQIXDvLhZ09tkWqKDzUaDz2TG3EyTFnaFdNKsy35d/s400/IMG_7039.jpg" width="266" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Hank receives his medal from the Grand Master.</td></tr>
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With smiles and hugs we were led into the hall, where room was made for Hank and I to slide into a row with the rest of our team. It was a nice day, but Hank was cold. "Let me get you a blanket from the cart," I said. "I'll get it!" came from the row in front of us. Nineteen year old Keanu, companion to his mother, Sandra, another malade, jumped up. A moment later he returned with a blanket that I wrapped around Hank. "Better?" I asked. Hank nodded but couldn't seem to really warm up.<br />
<br />
Ten minutes later, the introduction of the Grand Master was made to the applause and cheers of the room. A large man with a British accent, Fra' Festing seemed strong, humble, jovial and serious...all at once. Although from England, he lives most of the time in Rome, where the headquarters of the Order is located. With a blessing of the medals by Bishop Soto, the ceremony started. Row by row, the Grand Master made his way through the room. We handed each other our cameras, in hopes of getting the rare photo of the Malade with the Grand Master. As he approached our row, our excitement grew, and then he was there...he reached me first and as he placed the medal in my hand, he clasped both my hands around it. I have no recollection of what he said, if anything, but I was completely starstruck and grateful to be there. Hank was next and Fra' Festing talked to Hank, but I could not hear what was said. But although fleeting, the moment was longer, he lingered...and Hank smiled.<br />
<br />
As we pinned our buttons on, I could see Hank was rapidly declining. "How are you feeling?" I asked. "Not good...I have a headache," was the response. He laid his head on my shoulder...his head felt clammy. With the ceremony over, we once again loaded up the carts...but last one in seemed to mean last one out...and so we sat on the steps and waited. At last our voiture was free and Hank was loaded up. Well, not only did we have the Hine's as our team for the day, but we also had the Most Reverend Bishop Jaime Soto. "All set?" he asked as he grabbed on to the back of the cart. We joined the procession and made our way back to the hotel. Hank and I headed up to the room where Hank changed back into his sweats and I headed down to lunch, in search of something he could eat. I returned with a bowl of soup, french bread, banana and crackers. (I had a lot of help from Nurse Maura, gathering up things) Hank did not like the soup, (neither did I) and accepted the bread and crackers. He was happy that his phone was getting Internet and didn't even respond when I told him I was going to run down and eat lunch.<br />
<br />
There was free time after lunch today and Malades and companions were encouraged to rest. Perfect! Just what we needed. The next event was not until 3:30, when we would gather in the garage to head over to the Domaine for the Blessed Sacrament Procession and Adoration and Blessing of the Sick. After a quick lunch, and contact with Bishop Soto and the Hines, I headed back to the room. Hank was still awake and feeling better. We had a chance to just chat with each other and reflect..."What do you think of all this?" I asked. Hank sat quietly for a moment. "I feel stronger in my faith," he said. We talked about the boys he had been hanging around with. "Are they nice? Do you like them?" He responded with enthusiasm, "They are SO nice. I really like them. They inspire me to put on the uniform they are wearing (The Order of Malta) and come back here." What more could I ask for? Although tired and not feeling well...Hank was happy, full of faith and inspired. Healing comes in many forms...<br />
<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgVf2ZJ_btYIEBC8Ve-sdLrK0jjASToXqt_d_pmGcteDtNmVP49SMa0TC3hAdsdE_U7qB2LJC67BND90mRh6lUKvvqnyJPCNecx2sgE9c_P0WV5HMxleNzVSU6nRY3ugFJliUo6aQ2EClmC/s1600/_N4P8385.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgVf2ZJ_btYIEBC8Ve-sdLrK0jjASToXqt_d_pmGcteDtNmVP49SMa0TC3hAdsdE_U7qB2LJC67BND90mRh6lUKvvqnyJPCNecx2sgE9c_P0WV5HMxleNzVSU6nRY3ugFJliUo6aQ2EClmC/s320/_N4P8385.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">The size of the crowd</td></tr>
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Hank slept the afternoon away. I woke him up before adoration. "What do you think about going?" I asked. "OK," he said. I plied him with more Lourdes water and we headed down to the garage. Loaded up, we were once again on our way. With Jim as our puller and Christine and Bishop Soto as our pushers, I walked alongside the voiture, where I could talk to Hank. It was clear skies, although humid...and a bit hot. As we got to the concourse, they separated Malades and companions. The pullers brought the voitures in and parked them side-by-side in long rows. The next row of voitures were parked directly behind, again in long rows. I had a moment of panic when I realized Hank was locked in! Knowing that he wasn't feeling his best, I wondered..."what will happen if I need to get him out of here?" Katherine saw the look of fear in my eyes and I said, "Hank's locked in..." She put her arm around me and we made our way through the crowd to where Hank sat. "How are you feeling?" I asked. "My chest hurts," he replied. I gave him to some more water and chatted with those around us. The afternoon was warming up and the humidity made the air seem heavy.<br />
<br />
A few minutes later, I looked over at him. He didn't look right...something is wrong. "Hank, what is it?" I asked, trying to keep the alarm out of my voice. "My chest hurts, it's hard to breathe," he responded. I grabbed the nearest Knight. "Hank's not well! His chest hurts! It's hard to breathe!" Nurse Maura was at my side immediately. "Hank, how are you? What is wrong?" Once again Hank answered, "My chest hurts." "We need a doctor!" Maura said loudly...and off she went to locate one. Within a minute, she was back with a doctor in tow. He listed to Hank's heart...and then he listened again. Those around us stopped talking and a hush started to go through the crowd. "His heartbeat is rapid..." said the doctor when he finished. "It's too fast...we need to get him out of here." And there it <br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjqoPPuo99WcNDbMgHHVcV4R5NFXY7fC9gHkedEKGd9UajkS7qEtFJqGAdosG3GVi2K8CGeyn_ip02Pcq1ahMbytKiTYRa-tRfjbBanwMNC7yZByGWjuFI_zknfKtz3xhTPqjQl1_bGwK7C/s1600/Sick.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjqoPPuo99WcNDbMgHHVcV4R5NFXY7fC9gHkedEKGd9UajkS7qEtFJqGAdosG3GVi2K8CGeyn_ip02Pcq1ahMbytKiTYRa-tRfjbBanwMNC7yZByGWjuFI_zknfKtz3xhTPqjQl1_bGwK7C/s400/Sick.jpg" width="400" /></a></div>
was...my fear. Locked in with no way to get out. But I should have known that the quick thinking Knights of Malta would have a plan. They quickly had Hank switch carts with a malade who's cart was on the end. As the others looked at us with alarm, "He'll be fine," they called, "we are praying," I heard. Hugs and and hand holds...they disengaged the voiture. Bishop Soto appeared at my side and grabbed the back of the cart. "Oh Bishop Soto!" I said, "You don't have to go with us! Stay here and enjoy!" Without releasing his hands, he said, "Oh no...I've got this! Let's get Hank back!" and we started making our way against the flow of traffic..with thousands of people here, this was not the easiest tasks. The doctor who listened to Hank's heart accompanied us back to the hotel...as did Katherine the Red Team's assistant team captain, I felt terrible that they would be missing adoration and making this walk all the way back, but they assured me that all would be fine.<br />
<br />
Back at the hotel, Dr. Jim, Katherine and another doctor, all escorted us to our room as Bishop Soto and Christine took care of the voiture. Soon the doctor we woke in the middle of the night,along with another doctor showed up and there we were...Hank and his team of medical professionals! As the one doctor listened to his heart, the other three stood attentively watching. "I think he is dehydrated," said one. They all agreed. I so wanted to step back and take a photo....when do you have FOUR doctors come to your room to treat you? And they weren't in white coats, but in the black uniforms of Malta...but would I look like an uncaring mother? "Excuse me...could you all get around Hank and smile for a photo?" yeah...didn't think that would look very good...but I bet they all would have done it!<br />
<br />
With all in agreement that Hank was dehydrated, they stood and waited for Hank to drink the glass of water by his bedside. "Don't worry," they told me. Just keep making him drink water and he will be fine. All left but Dr. Jim, who said, "Let's leave the door to your room open and the window and get a cross breeze. I did as was directed and sat down on the bed next to Hank. "You'll be fine," I told him. He nodded and drank the water. A few minutes later, Dr. Jim appeared with a glass of ice. "This will help make that soda easier to drink," he said, "it has some calories in it, so see if you can get him to drink that as well." He said he would be down in the lobby if we needed him and left.<br />
<br />
Hank and I once again had a chance to talk...to relfect. "You know," he told me, "I had no idea there are so many good, kind people in this world." I had to agree...although I think I knew...I just didn't expect them all in one place...!<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjBh2SVzzFAZ5y-HHC9F3mlei5AxqDGkb35zww1MNC1GHmuvcm5eSFbNwl-Z3cG3S5ujZA5F1bQoGQ2t12oyQ7N6cClbKysQ4LkY9gwpw1AbW1jSXzw8IAeLNG0BtKk9A0W49ZIpZCl-zRI/s1600/IMG_0103.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjBh2SVzzFAZ5y-HHC9F3mlei5AxqDGkb35zww1MNC1GHmuvcm5eSFbNwl-Z3cG3S5ujZA5F1bQoGQ2t12oyQ7N6cClbKysQ4LkY9gwpw1AbW1jSXzw8IAeLNG0BtKk9A0W49ZIpZCl-zRI/s400/IMG_0103.JPG" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Companion Medal</td></tr>
</tbody></table>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgVvG7qk9xtgMuHZBQVAQ3zOVtfu-_5PeqvtE5RDb6e85HBMeb6S-eVhKfmeQqG6XzxSjFEqqqnXW3jv3bG-YZ1OZ7dECv5R4q9Ny-8DZgg0NkmWKD84g4YLdq12yKL3GEUkSumgPCTP-mv/s1600/P5020174.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="476" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgVvG7qk9xtgMuHZBQVAQ3zOVtfu-_5PeqvtE5RDb6e85HBMeb6S-eVhKfmeQqG6XzxSjFEqqqnXW3jv3bG-YZ1OZ7dECv5R4q9Ny-8DZgg0NkmWKD84g4YLdq12yKL3GEUkSumgPCTP-mv/s640/P5020174.jpg" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Mass at the Grotto.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgBMWKeYbmfqdKo90DixHRR2O_FOm8v0ivV7D1UBlxTiJdL30knIjHvGH0CRYZVTCnJkK8rYg0CumOOQfZq-FxCWxvmJPaDhTjRqCyjLFsQZl2C5DCi0eOriLEDZYPTwQShJnRRwCZ4ios2/s1600/_N4P8294.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgBMWKeYbmfqdKo90DixHRR2O_FOm8v0ivV7D1UBlxTiJdL30knIjHvGH0CRYZVTCnJkK8rYg0CumOOQfZq-FxCWxvmJPaDhTjRqCyjLFsQZl2C5DCi0eOriLEDZYPTwQShJnRRwCZ4ios2/s640/_N4P8294.jpg" width="425" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Adoration Procession</td></tr>
</tbody></table>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhhIzaaq-MpgujUc5dwt4YD7fN8ND14loMP7RxwYwecZD7j93B3XRc9atWCoxUWGy4BMBDWCjZQa9BBXwz19-53RfBiGKq4JCHXoK_71LEau3HJ4wXh5PnLZ1hXmI-85ZDF4QUEd7hMy6W-/s1600/_N4P8295.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhhIzaaq-MpgujUc5dwt4YD7fN8ND14loMP7RxwYwecZD7j93B3XRc9atWCoxUWGy4BMBDWCjZQa9BBXwz19-53RfBiGKq4JCHXoK_71LEau3HJ4wXh5PnLZ1hXmI-85ZDF4QUEd7hMy6W-/s640/_N4P8295.jpg" width="425" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Procession of Adoration</td></tr>
</tbody></table>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjL7O0puaQg69AorRJhPd9WszM11e0Mq7c3YmG7ztxkdXIshE0foFIg0TbhsrjN_jUeZS3OIoAihmvyiRvntr_1DpDQEvtDUjyqRSRj3PWwhN8X4ULwjAQmIfp7xqsDoNIgy7CiBDaYGzy5/s1600/IMG_7085.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjL7O0puaQg69AorRJhPd9WszM11e0Mq7c3YmG7ztxkdXIshE0foFIg0TbhsrjN_jUeZS3OIoAihmvyiRvntr_1DpDQEvtDUjyqRSRj3PWwhN8X4ULwjAQmIfp7xqsDoNIgy7CiBDaYGzy5/s400/IMG_7085.jpg" width="266" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Another mother/son on our red team.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhbvOLQdcNIzkhgNiPWJxObHIf_t2hgeij7LmuvgYJPccxxb4BZp5UuZmRdmNCp94UuIhondVp7qRpxCXA41J0-FKV6kusMDqhTArV4CgqX_4oYVdIFsuujDLiR8FVgWd2HJO9sQbevQsmn/s1600/IMG_7117.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="426" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhbvOLQdcNIzkhgNiPWJxObHIf_t2hgeij7LmuvgYJPccxxb4BZp5UuZmRdmNCp94UuIhondVp7qRpxCXA41J0-FKV6kusMDqhTArV4CgqX_4oYVdIFsuujDLiR8FVgWd2HJO9sQbevQsmn/s640/IMG_7117.jpg" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">In front of the Rosary Basilica of the Immaculate Conception</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiB_kcIwOASLa0SSMQShjmsMsj_yuu6zt8xVKHxHm177RIbaUl2n0hg7u7HK9PCzZtiraIU5caKXULeBpkr9f8Lynh5yvux9hH42HSuWB2odDeXEgfDVn49N032e-2fsRjvjMdpnMDSV5gs/s1600/IMG_7122.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="426" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiB_kcIwOASLa0SSMQShjmsMsj_yuu6zt8xVKHxHm177RIbaUl2n0hg7u7HK9PCzZtiraIU5caKXULeBpkr9f8Lynh5yvux9hH42HSuWB2odDeXEgfDVn49N032e-2fsRjvjMdpnMDSV5gs/s640/IMG_7122.jpg" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Knights of Malta in their robes</td></tr>
</tbody></table>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEigdtNHsoHfEZid6F5NIgj8HOw2Ezemvwci1M29MEr1PmAwnFx_4S9iMewL7Hf1hmwY_SDJ91uDJZLoq8OfqzfU1e_qXP87IORyX8wSQn7nTowDaCIGuY6UxMelxVG5ax0PDUbah4O1VpZ7/s1600/IMG_7125.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="266" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEigdtNHsoHfEZid6F5NIgj8HOw2Ezemvwci1M29MEr1PmAwnFx_4S9iMewL7Hf1hmwY_SDJ91uDJZLoq8OfqzfU1e_qXP87IORyX8wSQn7nTowDaCIGuY6UxMelxVG5ax0PDUbah4O1VpZ7/s400/IMG_7125.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Knghts of Malta</td></tr>
</tbody></table>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj9nNSKnAgGKdiS0GIqmIEfVpHkVODkwX2YS48GOzW_jnOrQl-rw6AuHSFebbAs6_LqMHh47FtSXZWU_2xJJTJD1LPCZn5nVLflwg6PRzefU_KrtnTMN_TeTYjtk6GwiZeneOppJyKQP_dy/s1600/IMG_7127.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj9nNSKnAgGKdiS0GIqmIEfVpHkVODkwX2YS48GOzW_jnOrQl-rw6AuHSFebbAs6_LqMHh47FtSXZWU_2xJJTJD1LPCZn5nVLflwg6PRzefU_KrtnTMN_TeTYjtk6GwiZeneOppJyKQP_dy/s400/IMG_7127.jpg" width="266" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">The Most Reverend Jaime Soto</td></tr>
</tbody></table>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh2R7nd8vatekfVK-QSfkif8bHPRsp1s6iYxStWnu1UZtGkZLqksP56ia5Qw6FsrjcnAqlHt7GTUFui3hPeN3i7q_VQXkrFL7RkqngL2pRmcDCaeKYCdIkHap2X-OWbJA2TKM6Tj-enKdjK/s1600/IMG_7128.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh2R7nd8vatekfVK-QSfkif8bHPRsp1s6iYxStWnu1UZtGkZLqksP56ia5Qw6FsrjcnAqlHt7GTUFui3hPeN3i7q_VQXkrFL7RkqngL2pRmcDCaeKYCdIkHap2X-OWbJA2TKM6Tj-enKdjK/s400/IMG_7128.jpg" width="266" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Adoration Procession</td></tr>
</tbody></table>
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<tr><td class="tr-caption" style="text-align: center;">Dames of Malta. Nurse Maura in the middle.</td></tr>
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Terrihttp://www.blogger.com/profile/03013764786276300558noreply@blogger.com0tag:blogger.com,1999:blog-8956351798752751809.post-13233750783866873252015-05-04T10:48:00.000-07:002016-01-31T13:08:08.262-08:00Day 4: The Grotto of Massabielle in Lourdes, France<div class="separator" style="clear: both; text-align: center;">
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Friday, May 1st, Day 4: The Grotto of Massabielle<br />
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Our second full day in Lourdes, and I awoke feeling good...finally! I could use a cup of coffee! Hank told me to hang on and just get to the Baths and I would feel better...and he was right!<br />
Hank and I got dressed and headed to the banquet room for breakfast. Today we would be with a different team with us and would be visiting the Grotto as well as the "Anointing of the Sick" Mass. After breakfast, we had team activities. Our team was to have a historical talk, which Hank was not interested in.. Instead, we met up with our voiture (French for "wagon" or "cart") team and discussed what we would do. Since Hank and I had not been able to get online and I was desperate to post on the blog and Hank's Facebook group, we headed up to "Cafe New Orleans"...one of the few cafes that advertised free WiFi. Today's team was another family and we were thrilled! Dad and Mom: Mark and Patty, and their son Rod and wife, Laura. All of them personable and engaging and interesting...and I could see Hank take to them immediately. (as did I!)<br />
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It was raining as we headed out the door, leaving the voiture behind, since it was a short walk. We settled down into a comfortable table and started to get to know one another as I desperately looked for a signal. Part of our visit to the Grotto would entail leaving our petitions there. We all took time to write our prayers down...why are we here? Who are what are we praying for? Hank had a list and so did I. We pretty much included everyone we know! Of course we had special intentions...for Hank's healing, and for other people in our lives who are ill and in need of healing or cures. OK...so I had a stack of papers... We finished our coffee (the first of many French Cappuccino's for me), I posted a quick update to the blog and Facebook and headed back to the hotel garage to start our journey to the Grotto.<br />
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<tr><td class="tr-caption" style="text-align: center;">The Read family escorts Hank to the Grotto.</td></tr>
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The walk was wet and it was the first time that we had to pull the cover up on the voiture. This brings a different feeling to the walk for Hank. No longer is he able to take in the scene from all sides or to have conversations with those pushing the cart...now he is isolated and his only view is straight ahead. I knew he didn't like it, and tried to stay within his line of sight, so we could talk. Our puller, Rod, was great. He would turn around and talk to Hank quite frequently, to keep him engaged. I could see everything though...and the procession was quite beautiful. somehow, we were in the front of the group, following directly behind the American flag and the Order of Malta flag.<br />
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As we walked through the bustle of the domain and headed in towards the Grotto, the feeling in the air changed. The talking ceased and the feeling of reverence was obvious. As we edged closer to the Grotto where Our Lady appeared, we could reach out and touch the rock of the cave walls. They were wet and I noticed people placing their hands in little streams of water as they ran down the rock. I wasn't sure if this was what we are supposed to do, since it appeared to me to be just the rainwater running down the cliff.<br />
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<tr><td class="tr-caption" style="text-align: center;">Hank waiting to pass through the Grotto for the first time.</td></tr>
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All of a sudden it was our turn and as we turned the corner we could see the spring that Bernadette dug at Our Lady's request. It was covered with a plexi-glass covering which seemed to be a little fogged up, not giving us the best look, but we could definitely see the water moving quickly and running down over the rocks. Here, is where we deposited our prayer intentions...or so we thought. Turns out the woman who grabbed our petitions from our hands and placed them in the intention box actually stuffed them in the <i>donation </i>box...which we realized when we saw the next box clearly marked with the word "Intention" (turns out the word is the same in English and French) ARGH!! I guess she was trying to help...but we were disappointed and would subsequently redo our intentions and return to the Grotto with our revised list. (adding more names and being more specific) The line was long and since we were in front, the Hospitalite' rushed us through, not giving us as much time as we would have liked...As we passed through, I looked up to see the statue of Our Lady, placed in the exact spot that she appeared when she told St. Bernadette, "I am the Immaculate Conception" all those years ago. I was awestruck and desired to just stay there...to stand and be with Our Lady, to pray and talk with her...but it was not to be at that time...<br />
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<tr><td class="tr-caption" style="text-align: center;">St. Pio</td></tr>
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With lots of time before lunch, our team asked if we would like to go elsewhere. Hank said yes. They took us to the Museum of St. Bernadette, where we saw pictures of her family, her house, articles of her clothing as well as the construction of the basilica. Next door to the museum is the Basilica of St. Pius X, the largest church in Lourdes, constructed almost entirely underground. We would be attending mass there on Sunday with the 25,000 other Order of Malta groups from around the world, prompting everyone to call it "The Superbowl Mass". We left the museum and entered the underground basilica. There was an obvious drop in temperature as we walked in. The church is built with pillars and rafters that look like an inverted boat. Tapestries hang along the concourse, depicting the lives of the saints, and the tabernacle is the largest I have ever seen. Mark was very well versed on the stories of the different saints and shared the information with us. We stopped at the banner depicting St. Pio (Padre Pio, before he was beatified), a very humble Italian priest who bore the Stigmata of Christ, could bi-locate and who resided in Italy until his death in 1968. I read about Padre Pio when I was about Hank's age and loved him ever since. As we talked about the amazing life of St. Pio, Hank whispered to me, "How come I don't know about him?" I explained that I had many books that he could read and he said, "good, I want to!" And as Mark went on to talk about other saints and their lives, I watched Hank listen intently, enamored with what he was hearing and realized another gift had been bestowed on us as a new world opened up before Hank.<br />
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The church was vast, with an altar right in the middle. The altar could be seen from all angles and a very modern crucifix stood there as well. Not all the lights were on, and so I could only imagine what it would look like fully illuminated. Mark pointed out an area behind the altar where all the clergy would sit. There were rows and rows of seats, and I couldn't picture them all filled but Mark assured me, they would be.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhfz3ZmxKeFyR0TISMIJkmQ4DOUkKzWQYeir-btwaoQd5dZVbXhVz7s2HhpT9ztvIa2qM7cBd1o22-oFmjOzT2h38N2DaluwodcfL1nPwRHwymeJ1lPXJntNkcYplkkuWYPnJIHXwDcoLFY/s1600/IMG_3014.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhfz3ZmxKeFyR0TISMIJkmQ4DOUkKzWQYeir-btwaoQd5dZVbXhVz7s2HhpT9ztvIa2qM7cBd1o22-oFmjOzT2h38N2DaluwodcfL1nPwRHwymeJ1lPXJntNkcYplkkuWYPnJIHXwDcoLFY/s400/IMG_3014.JPG" width="400" /></a>After spending more time walking around and sight-seeing, we headed back to the hotel for lunch, where we were joined by many others from the Order of Malta. Among them, Monsignor Kidder...a good and holy priest, who I would later have the honor of getting to know better. Also seated with us was another Malade, Jonathan as well as his mom. Jonathan is just 20 and the most positive young man I have ever met. I felt very fortunate to be in such great company and the great conversations and laughter was just what we needed. A quick visit from the Bishop of the Diocese of Sacramento was a real treat. He said hello to Hank and asked how he was doing. Bishop Soto had just flown in the night before. As the Chaplain of the Red Team, he had some catching up to do and was greeting each table. We have met Bishop Soto before...through our wonderful priest, Fr. Terry Fulton, pastor of St. Maria Goretti Parish in Elk Grove. (Fr. Terry passed away in Nov. 2013 and we miss him deeply). But I know that these men meet a great many people...and would not remember us...but was thrilled to see him!<br />
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After lunch we once again loaded up into the voitures and headed to the domain. We would be lining up for the group and team photos and then heading to St. Bernadette's for the "Anointing of the Sick" mass. It was a well-choreographed dance of placing the voitures right in front of the steps of the Rosary Basilica, a beautiful backdrop for our photo. I took position behind Hank, as did the other companions...taking their spots behind their Malades. Bishop Soto joined the rest of the Red Team and took a spot right next to me. He checked in with Hank and was met with a huge grin...Hank was slowly getting used to people asking him how he was doing and was so pleased to see who it was! Little did I know just how many times we would interact with Bishop Soto and how close we would all become in a short time.<br />
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The photo was quick, as was our team photos. After our photo, we had a few minutes while we were waiting for the other teams. All of the Malades had been given flowers in honor of May Day and Hank was going to give his to Our Lady. In the middle of the domain stands a huge statue of Our Lady of Lourdes. May is Mary's month and on the fence surrounding the statue, people had already started placing flowers...As Hank stood before the statue, I had tears in my eyes. We had crowned Mary many times over the years on May 1st...but never did I imagine that Hank would be placing flowers before Our Lady of Lourdes...in Lourdes! What a special moment and something I won't soon forget!<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjmSSI_wHb0CWEDV7NXK51Ns8M-EdcmHYbzPPILiSFGBJtjL97hMfx-XUw8ZgUS58LIH58zgGqbCzWko_Y13ys-HaNAnGyjP5wdO19Fali70xUSSfbgNpVMl9I_rPO84QitJniBGVIWY2Uq/s1600/IMG_3035.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjmSSI_wHb0CWEDV7NXK51Ns8M-EdcmHYbzPPILiSFGBJtjL97hMfx-XUw8ZgUS58LIH58zgGqbCzWko_Y13ys-HaNAnGyjP5wdO19Fali70xUSSfbgNpVMl9I_rPO84QitJniBGVIWY2Uq/s320/IMG_3035.JPG" width="320" /></a>With pictures complete, we were quickly underway to St. Bernadette's Church, the same church that we had the washing of the feet. Upon entering, Malades and companions were led to the pews...leaving every other one empty. Mass was celebrated by Bishop Soto, were he was accompanied by at least 40 members of the clergy...from priests to the Archbishop. It was a beautiful sight and I briefly wondered how would I ever enjoy Mass again, with just one priest celebrating the Mass? (I was getting spoiled!)<br />
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The Anointing of the Sick got underway as the clergy were sent off into the church, each taking a section. I looked down the aisle and watched as the priest blessed Sandy, a Malade that we had gotten to know quite well. Once again I had tears in my eyes, and with blurry vision, I snapped a photo for her...knowing she was just as amazed at being here, as I was! The priest made his way to Hank, where he anointed Hank's head with oil as well as the palms of his hands. Hank has been blessed in this way before every surgery...but something about being here, in Lourdes, made it so different. I started to see companions and Knights and Dames start to line up for a blessing, so I quickly joined a line and was blessed as well. ("OK," I thought to myself..."With both of us blessed...there is going to be some serious healing happening here!")<br />
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We had a nice dinner and then Hank took off for Gelato with the other teenagers and some parents. They came back and took up some seats at the bar...which I will call "lounge" so it doesn't sound as bad... I sat in the "lounge" as well and talked and visited with others. (all while keeping my distance from Hank, so not to embarrass him, but close enough that he knew I was there) Hank came to me the and asked to go to the Grotto with some of the other kids. As long as John Gabriel (the 17 year old son of the Knight who pushed Hank's cart the day before.) was going, I said OK. Sometime later, Hank was back, enjoying pizza with the rest of the group. He turned in around 10 pm and I followed up about an hour later. I got in the room and I knew...Hank is sick! He had obviously vomited and was now curled up and asleep on his bed. "Oh no!!", he had caught my bug. (I am pretty sure that I am "Patient Zero"). This can't be good...I am a very sympathetic mom...you vomit...I vomit. UGH! Alone with my sick child in France...no cell service, no Internet. Well maybe that was it...one time and he is good, I thought as I cleaned up the bathroom.<br />
I couldn't have been more wrong...and the next 24 hours had me scared...<br />
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<tr><td class="tr-caption" style="text-align: center;">Hank hanging out with the other teens.</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Hank seeing the Spring for the first time</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Rod taking Hank through the Grotto<br />
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<tr><td class="tr-caption" style="text-align: center;">The Grotto of Massabielle</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Waiting for the big group photo</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Getting ready for group photos<br />
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<tr><td class="tr-caption" style="text-align: center;">The Red Team!</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Visiting with Most Reverend Bishop Jaime Soto</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Hank and his team for the day: L to R: Patty, Rod, Hank, Laura, Mark<br />
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<tr><td class="tr-caption" style="text-align: center;">The procession to the Rosary Basilica.</td></tr>
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Terrihttp://www.blogger.com/profile/03013764786276300558noreply@blogger.com0tag:blogger.com,1999:blog-8956351798752751809.post-41784366093944998412015-05-03T22:00:00.000-07:002015-05-23T09:09:08.465-07:00Day 3 Part Two: The Baths of LourdesThursday April 30: Day 3~Part 2: The Baths of Lourdes<br />
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After a busy morning, we had a nice lunch and prepared to go to the Baths. This is what everyone looks forward to...a chance to bathe in the sacred waters of Lourdes.</div>
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We met once again in the hotel garage and loaded up the voitures. We were apprehensive and excited at the same time. This is how the Order of Malta explained the Baths to us:</div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEigRCKNOBtY7NXs4v3NMaiQD-KBcAhLH1lB2PL4-4Gg0WSMZ8Zbbxlj5uXItqIkfFgefGsB4QAWcFJZpGTsgEAg3FmqQrpbdJPZkpQl2TnZVApm2irK16Fhrk2MhAd5TM7IZSmMRVf6rCYg/s1600/IMG_6840.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="266" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEigRCKNOBtY7NXs4v3NMaiQD-KBcAhLH1lB2PL4-4Gg0WSMZ8Zbbxlj5uXItqIkfFgefGsB4QAWcFJZpGTsgEAg3FmqQrpbdJPZkpQl2TnZVApm2irK16Fhrk2MhAd5TM7IZSmMRVf6rCYg/s400/IMG_6840.JPG" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">The Grotto, where Our Lady appeared and the spring that feeds the baths is located.</td></tr>
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When Our Lady led Saint Bernadette to discover the source that now feeds the Baths, she instructed Bernadette, to "Go, drink at the spring and wash yourself there." Since Our Lady did not instruct Bernadette to bathe in the water, but rather to wash in it, pilgrims do not have to take the bath if they do not wish to do so. It is possible to follow Our Lady's instruction by simply and reverently splashing oneself with the spring water at the taps below the Rosary Basilica. Many people, however, do wish to immerse themselves in the water, and the only place to do so is at the Baths. </div>
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<tr><td class="tr-caption" style="text-align: center;">John and Valerie Burkart escorting Hank to the Baths.</td></tr>
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Water for the Baths is drawn from the spring itself. Hence, it is very cold. The water is continually filtered during the time the Baths are in operation and is changed twice a day. The water is tested frequently by qualified medical personnel and has never been know to cause disease, even though many people use the same water as they do, for example in a swimming pool . </div>
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The Baths are operated by the members of the <i>Hospitalite' de Notre Dame de Lourdes, </i>a group of dedicated, respectful men and women who follow strict procedures to ensure a reverent and deeply spiritual use of the spring water. Gentle and caring, they are experienced and skillful in working with all pilgrims.</div>
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<tr><td class="tr-caption" style="text-align: center;">A blessing from Monsignor Otellini</td></tr>
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As we made our way towards the Baths, each Malade was given a special blessing before crossing the bridge. Only Malades, Companions and their cart puller was allowed to go the Baths. I had talked to Rick, the Red Team's Captain, about Hank's experience in the Baths. I wanted him to be able to immerse his head in the water since that is where his illness is. Rick said he would check with the Hospitalite to see if it was possible. Rick came and found me as we were in line for the Baths. He said that although Hank would not be able to immerse his head, they would provide a cup of water for him to pour over his head. Rick offered to go with Hank and we agreed. We were separated with the men going to one side and the women to the other. Hank and I went in at the same time, and I was sad that I did not hug Hank or talk to him before he went in. I found myself very tearful over it...but wasn't sure why.<br />
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We were taken from the line and sat in little blue chairs with wheels on them...pulled over to just outside the door to the dressing rooms in rows of two's and sat waiting. There were many benches filled with pilgrims behind us and along the wall...all waiting for their turn to enter the baths. In our group, just the 50 Malades and companions were allowed in...with the rest of the Order able to return on Tuesday. As I sat and waited, I chatted with some of the other Malades and companions. This is where I learned why some of the others had come to Lourdes. I knew that Hank's illness would not compare to what other people were experiencing...and yet I know Our Lady chose Hank for a reason. But sitting there, listening to the ailments of these women, or of their Malades...my heart hurt and I prayed for them as well. The young woman with brain cancer...the mother who is a surgeon<br />
with two children...diagnosed with a ferocious bone cancer...the woman who's child has a pulmonary condition and is not eligible for a heart transplant at this time, the woman with breast cancer and more. As I listened and silently prayed...I asked Our Lady to intercede for all of us, and heal the many gathered here.<br />
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<tr><td class="tr-caption" style="text-align: center;">The waiting area</td></tr>
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It was finally my turn as they pushed my chair in, the other women waved farewell to me. I was pulled into a hallway, just outside a curtained off room. They helped me from my chair, opened the curtain and placed me in a chair. "Italia?" a woman in a blue Hospitalite apron asked. I shook my head. "Francais?" she asked. "English," I replied. "Ahh..Anglais!" she exclaimed. "Anglais!" She called to the other workers. A tall young woman with her blonde hair in a ponytail walked over to me. "English?" she asked. I nodded. "Stand up please." I stood and she held up a dark blue canvas curtain. "Undress please," she said. As I started to undress she said softly, "Please take off everything" and pointed to a hook hanging just outside the curtain for me to hang my clothes. "Hold your bra in your right hand." I did as was directed, "Give me your hands," and she took my right hand in her right hand and my left in her left...wrapping the curtain around me, with my arms wrapped around myself like a hug. She sat me down and I waited.<br />
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The room was small, with eight chairs placed against opposite walls. To the right was a curtained off area, where I knew the Bath to be. A woman, also a companion on our pilgrimage was brought in and went through the same procedure as I did. As I sat there in silent prayer, I noticed that she had flung her right hand out of her curtain with her bra hanging from her hand. "Why am I holding my bra?" she asked in a loud voice. The young woman ran over and tucked her hand back under the curtain, offering no explanation. I am such a rule follower, and although I wondered the same thing, I would never have thought to actually ask. I was so distracted and cracking up inside, that I couldn't focus on my prayers and all of a sudden, it was my turn. I didn't feel ready!<br />
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<tr><td class="tr-caption" style="text-align: center;">Photo from the Internet: we weren't allowed cameras</td></tr>
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The women walked me to the curtain and led me inside. There, before me looked like a stone bathtub. They held up a white sheet and raised up my arms. They took the dark blue curtain off of me and unwrapped the white sheet around me. It felt like a well choreographed dance, leaving me feeling completely covered and not exposed, as I expected. They turned me around and told me to step down onto the first step of the Bath. As I faced the Bath they said, "Do you have a prayer to say to Our Lady?" I said yes...but honestly could not remember a thing as the shock of the cold water hit me. As I gathered my wits about me they started to move me forward. "Step down, step down," they said, moving me forward. "Walk forward," prodding me along and holding my arms on either side of me. There was a small statue of Our Lady that I kept my eyes on...and as I focused on my petitions, they told me to sit, as in a chair. My brain told my body "NO! it is COLD!" But my body obeyed and I started to sit, still planning on saying my prayer. But as soon as my legs bent, they had me falling back, into the water! Keeping my head out of the water, they gently placed me in the water and pulled me back up, using the sheet for leverage. And before I knew it, I was done. "Oh no!" I thought, "I didn't ask Our Lady my petitions!" And then I realized that she knows why I am here. And at the same time, I was struck with the enormity of where I was...I was in Lourdes! I had just bathed in the waters of Lourdes! What a once in a lifetime experience! What an amazing gift! And then I was back in the dressing room, getting dressed. And strangely, just as I was told...even though I had no towel, I was practically dry! I noticed some drops of water on my legs, but as I went to get dressed my legs were dry.<br />
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<tr><td class="tr-caption" style="text-align: center;">After the Baths...the Baths are on the right side of this photo...with the Grotto underneath the Basilica.</td></tr>
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I was then placed back in a chair and wheeled out to where the rest of our party was waiting for those who had gone through the Baths. I came out and found John and Hank. I came over to Hank and he hugged me from where he sat in the voiture. John had a big grin on his face and said,exclaimed, "You look radiant! You are glowing!" And I believe I probably was! I asked Hank, "How did it go?" "Good," he said. "I am glad Rick went with me and I could go first. It was weird...a bunch of French guys sitting around in their underwear, staring at each other. And the water was really cold!" Gotta love the way he thinks! I bet it <i>was</i> weird and it really was cold. I asked if he was able to say a prayer before going in and he said yes. As I looked at Hank, he seemed different...more relaxed than I had seen him since we left home. His shoulders seemed to be have gone down...as if he had been holding his breath all this time and had finally exhaled. In the coming days, I would hear this from others...that Hank seemed different...more at ease. I don't know if it was just the nervous anticipation of the Baths or if the waters had a profound effect on him...either way, something beautiful was happening here.<br />
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<tr><td class="tr-caption" style="text-align: center;">Mausoleum Chapel at the top of the Rosary Basilica</td></tr>
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The next event on our schedule was the Tri-Association Mass, a mass where all three American Orders of Malta would attend: The Western Association, the Federal Association and the American Association. I think between the three groups, there were between 800-1,000 people taking part in the Mass. We left the Baths and headed to the Rosary Basilica, part of the area known as "The Domain". We had a little time, so we went to the top of the church, which is a mausoleum. It is lined with marble walls and is beautiful as you go into the inner chapel. Afterwards, we were able to stand outside the chapel and look out on the Domain...what a beautiful sight! We then headed down to the Rosary Basilica for Mass. We were seated and waited for mass to start. The church was full as the music started and the procession of the clergy got underway. The Mass was celebrated by Cardinal Timothy Dolan from NYC. (I have a Rosary that I bought at St. Patrick's Cathedral in New York, that has his image on the case...I SO wanted him to sign it, but never had the chance. I really should have stalked him a little better...) Attending Mass that is celebrated by a Cardinal is a big deal...Cardinals are appointed by the Pope and are the top of the Catholic hierarchy. I loved seeing the multitude of Priests, Monsignors, Bishops, Arch Bishops and Cardinals process into the church. I have only seen such things on TV, when watching the Pope celebrate Mass in Rome.<br />
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Cardinal Dolan said a beautiful Mass, telling us that "I am going to keep the Homily short, as we are all tired." I have to admit that a lot of us were falling asleep standing up...me included...and being in the second row...I wonder if he noticed! Inspiring Mass in the most beautiful of settings. It was a big day...Distribution of Rosaries, Reconciliation, Washing of the Feet, The Baths of Lourdes and now this beautiful Mass...what an amazing honor that has been bestowed on us! As I am hearing about how others were nominated for this trip, I am learning that our situation is unique and the way Hank's nomination occurred was no coincidence. Our Lady chose Hank for this pilgrimage...at this time of his life...and I am sure the reason will be revealed as we go on this journey...<br />
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<tr><td class="tr-caption" style="text-align: center;">Cardinal Timothy Dolan at the Rosary Basilica</td></tr>
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With Mass over, we headed back to the hotel for dinner, Hank in his voiture, as I walked alongside. Today was a turning point for Hank...getting used to the voiture, being surrounded by people whose sole purpose for this pilgrimage is his well-being. The love of Christ present in everything we are doing, and realizing he was hand picked by Our Lady for this journey.<br />
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We enjoyed a nice dinner with our cart team, and found out (sadly) that we would only have them for today...tomorrow we would have another pusher and puller...but we had already bonded and knew that this was a family that we felt so close to! And of course we would love the next group too...especially after they came over and introduced themselves. After dinner, Hank went with all the teens for gelato and then hung out with them in the lounge, while I kept an eye on him...and my Kronenbourg draft... Tomorrow would be another big day as we would get our first visit (one of many for me)...to the Grotto, where Our Lady appeared to Bernadette, and we would have the Anointing of the Sick Mass.<br />
It was only our first full day here, and already I knew this was a place we would not want to leave...<br />
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<tr><td class="tr-caption" style="text-align: center;">Rosary Basilica</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Above the altar at the Rosary Basilica</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">View from the Mausoleum above the Rosary Basilica, looking down onto the Domain</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhpvImQP0D3Bj23IGFUIzCV10ODftCKwg6ZSXiMJMHcnaMDhKa1Z02FcFvb4cnP4aoaMFS5TNLoZrxTle5XMqQNF-g3tLtPQPfMOvek-PlWi0aFpwjQyVrRUHcNkhBiFucuHN5d3IVZa5uP/s1600/IMG_6815.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="425" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhpvImQP0D3Bj23IGFUIzCV10ODftCKwg6ZSXiMJMHcnaMDhKa1Z02FcFvb4cnP4aoaMFS5TNLoZrxTle5XMqQNF-g3tLtPQPfMOvek-PlWi0aFpwjQyVrRUHcNkhBiFucuHN5d3IVZa5uP/s640/IMG_6815.JPG" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Hank and I across the river from The Rosary Basilica. The Grotto sits just behind us. The statue of Our Lady of Lourdes can be seen just to the right of Hank's head.</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Recessional Processional of the Clergy. Notice the men in skull caps or miters...those are the bishops and cardinals.</td></tr>
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Terrihttp://www.blogger.com/profile/03013764786276300558noreply@blogger.com1tag:blogger.com,1999:blog-8956351798752751809.post-88169464816109284052015-05-03T20:00:00.000-07:002015-05-23T09:07:40.812-07:00Day 3 Part One: Washing of the Feet* Internet has been down and cell service is not existing for me. I am keeping a journal and will post when the Internet is up or we return home.<br />
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<b>Day 3: Thursday April 30th.</b><br />
This day was so long, I have broken it into 2 parts...this is part one:<br />
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Apparently, travel is not agreeing with me...an intestinal bug has found me and kept me up all night with hourly runs to the bathroom. I feel terrible and am afraid to eat. "Just hang in there, Mom," Hank tells me, "you just need to make it to the baths and then you will be better." (I have faith that he is right...and I love that his faith is so strong)<br />
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This is our first full day in Lourdes and we are excited! The Red Team's nurse, Maura, stopped by our room to check on Hank and I. I told her I was struggling with a bug so she sent the team doctor by with a packet of Imodium. With a busy schedule ahead of us, we headed down to breakfast. We were met by our our Knight who would be our escort for the day. Today, we would be with a family. The same family who greeted us at the airport, with our name badges. What a nice bunch to start our trip off with! Parents John and Valerie and their 3 kids; Maria age 11, Juliette age 16 and John Gabriel age 17. All of them in their Malta uniforms and with big smiles, we sat down together for breakfast.<br />
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Thy were engaging and interesting and although Hank didn't say much, I know he was feeling better just being around a family. After breakfast, we had a meeting where we learned about the baths, which we would be visiting later in the day, as well as the other things we would be doing. As I looked around the room at all the other members of our team...I saw the hopeful faces of the other Malades and companions. Full of apprehension at what is to come...washing of the feet, visiting the baths where we would be immersed in the sacred waters of Lourdes, and so much more.<br />
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After the meeting, we ran up to our rooms to gather our things (and where I still struggled with my stomach bug), and then met down in the hotel garage. There, we found everyone assembled by team colors and searched out our cart. Hank and the rest of the Malades would be traveling by "voitures", three-wheeled carts that have a collapsible cover...and pulled by handle by a "puller" and pushed from behind by a "pusher". Each Malade is assigned a voiture and a team of pushers and pullers.<br />
Hank and I had talked about the voitures before leaving for Lourdes...the whole idea was weird and uncomfortable for Hank...having people pull you in a cart, being looked at by others... so I know he stepped into the cart with a feeling of unease. But as he looked around the garage and saw all the other Malades in the same position, I think he felt better.<br />
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Our team, was full of positive energy as they buzzed around Hank. Blankets,<br />
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water, an extra seat cushion, a rain cover...all in place for his comfort. John Gabriel was assigned a different Malade for the day, and was not part of our team. The garage was full of all the members of the Order of Malta, volunteers, Malades, companions and the members of the clergy. The chaplain for the day, said a prayer before we started out and blessed us. The prayer included a Hail Mary, and finished with "Our Lady of Lourdes...Pray for Us. St. Bernadette...Pray for Us." And with the United States Flag and the Order of Malta Flags lined up, we started our procession to <i>Eglise Ste Bernadette cote Grotte </i>(St. Bernadette's). We traveled together each voiture and it's team, chatting happily to the church.<br />
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Once there, the Malades were helped down and escorted to their seats. Hank and I sat together, surrounded by all the other Malades and companions, while the Knights and Dames took their seats behind us.<i> </i>The procession into the church started as numerous priests filed in to the strains of beautiful organ music and the choir lifted in song. After a welcome, they had the blessing of the <br />
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Rosaries and then distributed them among the Malades and companions. We were each given a rosary made by the Poor Clare's in Lourdes. An order of nuns who make the rosaries from the pods of the tree that grows on the grounds of the convent. Next was the ceremony of Reconciliation. The Priests, Monsignors, and Bishops spread throughout the church. Hank and I stood up and got in line for the opportunity of personal reconciliation and absolution. Hank went to a young priest, Fr. Jim, who we had met at the airport, and I went to a priest that I did not know. I later found out that he was a Bishop from Colorado, Bishop Sheridan. It was a very peaceful and heartfelt time, with a thoughtful confessor. Afterwards, Hank and I sat down for quiet reflection as the rest of the pilgrims continued through the process.<br />
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The last ceremony of the morning, was the <i>Washing of the Feet</i>. Our Blessed Lord washed the feet of his disciples at the Last Supper, <em style="background-color: white; color: #525252; font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 14px; line-height: 22.3999996185303px;">So if I, your Lord and Teacher, have washed your feet, you also ought to wash one another’s feet. For I have set you an example, that you also should do as I have done to you.’</em><br />
<span style="background-color: white; color: #525252; font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 14px; line-height: 22.3999996185303px;">(John 13:12-15)</span></div>
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Each team of Malades, followed by their companions, were brought up to the front of the church. The Malade took a seat, with the companion standing behind them, as either a Knight, a Dame or a member of the clergy knelt in front of them to wash their feet. I know Hank was nervous about this...and watched the ones who went before him, with a sharp eye. The Red Team was the fourth group to go up, so he knew what to expect. As Hank sat down, Our Knight, John knelt down in front of him, assisted by his son John, who held the basin and pitcher. Hank slipped off his shoes and socks as John carefully and lovingly poured the water over Hank's feet. John dried Hank's feet and then assisted him with his shoes and socks. As John was finishing, I was overcome with emotion. I tried to hold it in, but the tears flowed as we made our way back to the seats. As I wiped my eyes, Hank looked at me with concern, "Are you OK, Mom?" I nodded, "It's all just so beautiful." We made our way into the row and sat down...Hank put his arm around me and pressed my face to his shoulder as he patted my head. I was later told by a Dame, "I saw your emotion after the Washing of the Feet," she said, "I was fine until Hank put his arm around you and laid your head on his shoulder. Then I cried with you...it was just so touching and he is so sweet." That was the first of many touching moments. Hank impressed many with his kindness and compassion.<br />
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After the ceremony, the Malades were placed back in their voitures and started the procession back to the hotel. We could see the grotto from across the river, and stopped to take some photos. We headed back to the hotel for lunch, where we would prepare for our walk to the baths...</div>
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<tr><td class="tr-caption" style="text-align: center;">Hank and our voiture team at the Domain</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Hank and I in front of the Grotto. The statue of the Blessed Virgin is visible between our heads.</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Central Coast Boys<br />
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<tr><td class="tr-caption" style="text-align: center;">At the bridge, looking at the Rosary Basilica.</td></tr>
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Next up...Our visit to the baths of Lourdes...</div>
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Terrihttp://www.blogger.com/profile/03013764786276300558noreply@blogger.com2Lourdes, France43.091463 -0.04572600000005877542.998724499999994 -0.20708750000005877 43.1842015 0.11563549999994122tag:blogger.com,1999:blog-8956351798752751809.post-89545647570176558922015-05-02T02:19:00.001-07:002015-05-14T08:22:47.823-07:00Day 2: Arrival in Lourdes* Note...between spotty Internet and a new IPad...I am not able to upload photos...will add them when we get home.<br />
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Day 2: The Arrival<br />
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Our excitement grew as we flew closer to France. Hank kept a sharp eye on the map showing our progress and nudged me as we neared Ireland. "Mom, look out the window!" he said as I raised myself up to see. As I looked down...there it was...the coastline of Ireland! Hank looked at me with a big tired grin. "This is going to be quite an adventure," I thought to myself.<br />
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<tr><td class="tr-caption" style="text-align: center;">Pyrenees Mountains</td></tr>
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He continued to update me on our progress as we got closer and finally as we begun our descent into the Pyrenees airport, we could see the French countryside...just as we had imagined! We landed safely with a buzz of excitement...and as the wheels touched down, applause and hurrays broke out. This group was ready to go!</div>
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We disembarked and got our first look at our surroundings. What a beautiful site! The airport is situated just outside of Lourdes, at the base of the Pyrenees Mountains, which separates France from Spain. Their snow covered caps were jutting up to the sky...a magnificient site that I have only seen in movies and magazines. (I hope to get up to the Fort that sits above Lourdes to really capture the view) We were quickly brought to the luggage area to identify our bags and then told to leave them and board the bus to Lourdes, as the Order of Malta would deliver our bags to our rooms. The buses filled with weary pilgrims headed into town on a country road with fields, farmhouses and the Pyrenees as our view.</div>
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As we neared Lourdes and started seeing the signs, the voices started to raise in excitement. Our team captain (we are the Red Team), Rick, gave us information as we drove into town...a village really...of narrow streets and pedestrians who aren't afraid to stand in front of a bus and a bus driver who is not afraid to run them over! We pulled up to our hotel and disembarked, with direction to go up to our floor, get our keys, freshen up and wait for our bags. Doing as told, Hank and I made our way to the 2nd floor and received our keys. We entered our room to find a clean, sparsely decorated room with two twin beds side by side. "Why are the beds so close together? Hank asked with some alarm. I walked over and pushed each bed to the wall. "Better?" He smiled and nodded. (Sheesh...such a teenager!)</div>
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<tr><td class="tr-caption" style="text-align: center;">Lourdes, at the edge of the Gave River</td></tr>
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After we got our bags, we had some downtime rest, unpack and unwind. Hank took a nap as I<br />
unpacked. He was quite frusterated that he could not connect to the Internet and gave up and slept. We were told to not sleep more than an hour, as we needed to reset our body clocks for the time change. Since we tend to be rule followers, Hank and I did as told and took brief naps and then prepared for dinner. Dinner was held on the first floor of the hotel, set up in buffet style with numerous stations set around the room to accommodate the 300 people in our group. We were seated with our teams and Hank and I took seats at at empty table for four, not wanting to interfere in anyone's table arrangements. A couple seated at another table looked over and saw us, got up and immediately came over to us. "May we join you?" they asked. We nodded. They were a couple from the San Francisco Bay area and explained that they had come to Lourdes many years ago with their daughter who was a "Malade". (this is the name for the sick that the Order of Malta uses). Their daughter had blood cancer and was quite ill. They brought her here and she was better when she returned home. She was ultimately cancer free through treatment, etc. and they joined the Order of Malta and have returned every year since. We continued to have wonderful conversation as I told them of how Hank was chosed and the belief that his journey to Lourdes started long before the letter was sent to Fr. Russ, asking for a nomination to Lourdes.</div>
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<tr><td class="tr-caption" style="text-align: center;">A walk in the village.</td></tr>
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After dinner, we met with our team leaders, and given direction for the next day. We were excused and had free time to do whatever we like...walk around the town, go to the grotto, go to bed...lots of options. Hank and I decided to take a walk and were met by a Dame of Malta and a whole group of kids. "Hank, join us for gelato!" she said, and introduced Hank to the other kids. As I reached in my purse to grab my wallet, she stopped me. "I've got it!" she said and paid the man. </div>
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As Hank got acquainted with a couple of teenagers I had time to walk around and take some pictures. The village is hilly, with narrow streets and three and four story buildings on either side of the street. Some taller buildings as Lourdes is only second to Paris in terms of hotel rooms per capita. We walked around a bit more and headed back to the hotel to get the much desired sleep we needed.</div>
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We got ready for bed and Hank sat down with his phone. "I'm connected! He exclaimed. And as I laid down to sleep, Hank was happily chuckling over some funny video on his phone. "I wonder if he will get anything out of this trip?" I thought as I fell asleep. I should have known that Our Lady had big plans for Hank...</div>
Terrihttp://www.blogger.com/profile/03013764786276300558noreply@blogger.com1tag:blogger.com,1999:blog-8956351798752751809.post-22961959277660512732015-05-01T01:28:00.001-07:002015-05-08T18:19:12.688-07:00Day 1: The Flight to Lourdes Day 1: Trip to Lourdes, LA start.<br />
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I am so tired...I need to sleep...And yet I can't seem to get even a wink. I took 3 melatonin...and Hank took 2 but we can't get comfortable...we are going to be a mess when we land...and there will be no sleeping when we get to Lourdes.</div>
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It was hard to say goodbye to Jeff, Charlie and Lucy. As we stood at the security gate and I realized this was it. I cried. Not a big surprise...I have been crying since Hank was chosen for this trip!</div>
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While standing in line to check in, we saw some familiar faces. Two other families who live just 40 miles from us, were also going on this trip. Each family has a 10 year old boy, who happen to be best friends, and they were checking in as well. We had not met in person before...The Order of Malta gave us yearbooks of sorts and I had seen their photos and location, so I reached out to them through emails. So although we had not formerly met, or even talked beyond emails, we immediately recognized each other.</div>
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We soon said our goodbyes and Hank and I showed our boarding passes and headed up the escalator to security check in. It was a lengthy process and Hank's bag got flagged...he had granola bars...so did I, but he got stopped.(We did keep the food though)</div>
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And then it was off to our gate...as we rode the people mover, a man dressed in black approached. He was a priest and in the order of Malta, who would also be going on the trip. Fr. John Love introduced himself and said he was from Santa Barbara, just 90 from where we live. 3 other Knights of Malta also caught up with us, one, who upon hearing Hank's name said, "Oh I know Hank...I was on the selection team...I know your whole story and am so pleased you could join us." *Thank you!* I said, </div>
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As we approached the gate seating area, I said to Hank, *I think we should go eat...Fr. John jumped in with a "Yes, Yes...let's go eat" and led the way. While standing in line at a burger place, I looked around the food court. Black bags with the red cross were everywhere. Men dressed all in black </div>
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with just the red cross over their chest, Catholic priests all in black with nametags carrying the red cross...I was amazed.<br />
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Fr. John bought our lunch and we had such a nice time...he has a way with teenagers! While sitting there, a woman waved to me. It was the other mom who has a 10 year old, and live near us. We both recognized each other from our photos. She and her little boy came over to say hello. We hugged each other like we've known each other forever. And I feel like we have!</div>
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We got in line amongst nuns in full habits, priests, Knights, Dames, Malades, companions, children, old, you name it.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh0QUgQWUE1vxJCtr8-IEi_7FGz2lFGT4Jz00rU4uJIPlb0P4qRZ27w62wQ6A7DcyGVHJnA0LF_CrsdNm8jWTXnC7RW5hKYLfenlDalM4pieMCagz7DsOtIx111JkmvP8jhGYE4wENUpVO9/s1600/airplane.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh0QUgQWUE1vxJCtr8-IEi_7FGz2lFGT4Jz00rU4uJIPlb0P4qRZ27w62wQ6A7DcyGVHJnA0LF_CrsdNm8jWTXnC7RW5hKYLfenlDalM4pieMCagz7DsOtIx111JkmvP8jhGYE4wENUpVO9/s200/airplane.jpg" width="200" /></a></div>
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And so Hank and I are still awake as the plane is dark and everyone sleeps. The cabin lights have been off for hours and I so want to sleep. But I know that the minute I finally nod off is the minute they will serve breakfast!</div>
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I think Hank is overwhelmed and excited...this is going to be the trip of a lifetime!</div>
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Terrihttp://www.blogger.com/profile/03013764786276300558noreply@blogger.com0tag:blogger.com,1999:blog-8956351798752751809.post-71642907725187528252015-04-27T17:18:00.001-07:002015-04-27T17:18:12.519-07:00The Faith Journey BeginsIt's been forever since I updated this blog...and I very much want to...but we are heading on the first leg of our trip to Lourdes...<div>
So in the meantime...Here are some photos from last week, when the Bishop of Monterey, Bishop Garcia came to bless Hank before his journey.</div>
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Will write more tonight or tomorrow....</div>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEilHCdX0v_dX0_b-sxAzHEpN69ixKRqKaqpbXPL3Flrdyd0w5jVRihnTx6p710Z71yltHhyphenhypheniPVlJ27xgghyphenhyphenT_5zC4Lq157hVSldzP3GoChSDQ9Mv-eg7kPtnOUfZfVlvzJEHV76iPQ5kJb9/s1600/Bishop+and+hank.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEilHCdX0v_dX0_b-sxAzHEpN69ixKRqKaqpbXPL3Flrdyd0w5jVRihnTx6p710Z71yltHhyphenhypheniPVlJ27xgghyphenhyphenT_5zC4Lq157hVSldzP3GoChSDQ9Mv-eg7kPtnOUfZfVlvzJEHV76iPQ5kJb9/s1600/Bishop+and+hank.jpg" height="425" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Hank gets a hug from Bishop Garcia</td></tr>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgH9sAjhqblEJy68ZYzaApsQqFBO2dn9L-SzWHT6di5tjsZzHpJ3kuSHmsiB_k1-0ncSBpOPA6d96s0H_uBW-H4YeZEsC0q1wGlruFvyhT3KePtg394bKCwkLMoe1V8gy2XDcYS3GiBZYlz/s1600/Bishop+Garcia.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgH9sAjhqblEJy68ZYzaApsQqFBO2dn9L-SzWHT6di5tjsZzHpJ3kuSHmsiB_k1-0ncSBpOPA6d96s0H_uBW-H4YeZEsC0q1wGlruFvyhT3KePtg394bKCwkLMoe1V8gy2XDcYS3GiBZYlz/s1600/Bishop+Garcia.jpg" height="640" width="425" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">A quiet moment</td></tr>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgAY0ewGmuHLrOGC6hpkVYqvYZRvRp-9y1A2ozfSLmQK4JfPQ7-o5rRpGOErJYV8hT9pYooFDfjQp94rwBUKt5oxH3PUQ09YTLkKq0qKBG_YEY61RtEMobkCM6PELRcuVTNcMtekIoYcK7J/s1600/Lucy+Blessing.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgAY0ewGmuHLrOGC6hpkVYqvYZRvRp-9y1A2ozfSLmQK4JfPQ7-o5rRpGOErJYV8hT9pYooFDfjQp94rwBUKt5oxH3PUQ09YTLkKq0qKBG_YEY61RtEMobkCM6PELRcuVTNcMtekIoYcK7J/s1600/Lucy+Blessing.jpg" height="266" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Little sister gets a blessing</td></tr>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgDZiVOp99fhHTv5Aw7OgqN50tQnIlhxSiPgXWbD-xq3As0IMyps4x3nfNr_dkwtEN60lvPl13QxPi2-fLqBMb69nX81Ow1PsLV7j73euqTVVsL7y9e0DQTM1mSmT_ehGst3QjePYQhjEjf/s1600/Hank+and+clergy.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgDZiVOp99fhHTv5Aw7OgqN50tQnIlhxSiPgXWbD-xq3As0IMyps4x3nfNr_dkwtEN60lvPl13QxPi2-fLqBMb69nX81Ow1PsLV7j73euqTVVsL7y9e0DQTM1mSmT_ehGst3QjePYQhjEjf/s1600/Hank+and+clergy.jpg" height="426" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Fr. Russ Brown, Hank and Bishop Garcia </td></tr>
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Terrihttp://www.blogger.com/profile/03013764786276300558noreply@blogger.com0tag:blogger.com,1999:blog-8956351798752751809.post-1529957026944395892014-06-25T11:22:00.000-07:002014-07-03T15:38:52.354-07:00Happy 13th Birthday Hank!<span style="font-family: inherit;"></span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEijtPncY6xGs8RduLt6iIenhGGDP6ZFC20t8RaEqR9yeAQ0M18IVy_KwSKdJ6-f-NRnI3AjUZ20gpwCS0Ytrgz6D1MILMt3u4ks7h6MCo-askrB0N4WqAWS1x-nPAkI4ryOBESi-T-xKWWw/s1600/Bday+sing.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: inherit;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEijtPncY6xGs8RduLt6iIenhGGDP6ZFC20t8RaEqR9yeAQ0M18IVy_KwSKdJ6-f-NRnI3AjUZ20gpwCS0Ytrgz6D1MILMt3u4ks7h6MCo-askrB0N4WqAWS1x-nPAkI4ryOBESi-T-xKWWw/s1600/Bday+sing.JPG" height="240" width="320" /></span></a></div>
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<span style="font-family: inherit;">Hank is officially a teenager! He has been eagerly awaiting
turning 13 and at long last has achieved this milestone! Sadly, we weren’t home
to celebrate and Hank was still miserable recovering from surgery, but at least
we were at our home away from home, The Ronald McDonald House in Madison! <o:p></o:p></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi2aIWzUNhd1dkuuvqVZUAwqttNy2kX8kZVr8J1whtK8bf6B8pDkfpoAo7fzla4BHXgML3l_ygzziOKvYlnz4z29RzGIig2hyZC1Q-w6mJGZ9h_3urqFT4MKxypPvmwoLOzwG0i4pLLH6qC/s1600/Lucy+sign.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><span style="font-family: inherit;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi2aIWzUNhd1dkuuvqVZUAwqttNy2kX8kZVr8J1whtK8bf6B8pDkfpoAo7fzla4BHXgML3l_ygzziOKvYlnz4z29RzGIig2hyZC1Q-w6mJGZ9h_3urqFT4MKxypPvmwoLOzwG0i4pLLH6qC/s1600/Lucy+sign.JPG" height="320" width="249" /></span></a><span style="font-family: inherit;">Jeff and I got up early to decorate the kitchen and dining
room with streamers and balloons and to hang up the “Happy 13<sup><span style="font-size: x-small;">th</span></sup>
Birthday Hank!” sign that Lucy made. We hung more Happy Birthday signs in other
parts of the house and waited for Hank to come downstairs. Since we have not
acclimated to the time change…we have been keeping late hours…and getting Hank up
and out of bed is not an easy task… Well, and I guess the whole, “recovering
from surgery” thing plays into that as well… <o:p></o:p></span></div>
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<span style="font-family: inherit;">Anyway, with a 10:30am follow-up appointment with LuAnn, the
Physician's Assistant that works with Dr. Siebert, we didn’t have time to waste!
Hank came down to the kitchen with Jeff, while Lucy, Charlie and I waited for
them. Hank rounded the corner and saw all the decorations…and what was that?
Did I see that? The faint start of a half-smile! Hank looked around the room,
“Nice.” He said. We prepared a quick breakfast and sat down to eat. Jeff pulled
out a gift and some cards to get the day started and Hank happily opened his
first gift of the day. He gave us a smile and a thank you…and hugs all around.
I had high hopes that today would pull him out of his funk…but I could see he
was still glum as we prepared to go to his appointment… Getting stitches out
has never been on Hank’s list of fun things to do…<o:p></o:p></span></div>
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<span style="font-family: inherit;">We made it to the appointment with not a minute to spare. They
brought us back to the room, where we waited for LuAnn…with all 5 of us crowded
in there, we make quite an impact. The door swung open and Dr. Siebert walked
in! What a happy surprise! He was all grins with a big “Happy Birthday!” and
admired his handiwork. He carefully removed the stitches over Hank’s eye. The
incision was perfect…thin and barely noticeable. Hank had a scar there before
and when I mentioned it, Dr. Siebert responded with, “Oh, I cut that out and
got rid of it.” I am so glad he did that! It makes a world of improvement
already!<o:p></o:p></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg-zYiTpgC3e1tvY3-EXD_xUvGfsfhNd9Hl4e5pm4xx1HePXIO-IPp_ZdOv0XEn-qvRoOPFVKfsMkAzSicYfP1BQXN56yLoN59bmmOyWe02BMPpdqxRh1DmTaf9r5WJkYLfRPI7A4tPKwtG/s1600/stitches+out.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><span style="font-family: inherit;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg-zYiTpgC3e1tvY3-EXD_xUvGfsfhNd9Hl4e5pm4xx1HePXIO-IPp_ZdOv0XEn-qvRoOPFVKfsMkAzSicYfP1BQXN56yLoN59bmmOyWe02BMPpdqxRh1DmTaf9r5WJkYLfRPI7A4tPKwtG/s1600/stitches+out.JPG" height="209" width="320" /></span></a></div>
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<span style="font-family: inherit;">Getting those stitches out made a difference to Hank. He
felt better already! He still needed to get the plastic wrap off his cheek, and
the stitches in front of his ear removed, as well as the stitches running down
his face between his eye and nose…but the fact that the stitches coming out did
not hurt…was very important to Hank. Dr. Siebert told Hank that he would take
the rest of the stitches and plastic off on Thursday. He talked to Hank about
how he would look as he recovers, and Hank listened with great interest. With
an appointment set to get the plastic off and the rest of the
stitches removed, and with the obligatory photo taken of the two of them, we
headed out to start Hank’s birthday celebration.<o:p></o:p></span></div>
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<span style="font-family: inherit;">A few days ago, Hank confided in his dad that he didn’t want
to go out because, “I don’t like the way I look,” and “I am not comfortable.”
So, I didn’t have high hopes that he would want to do anything for his
birthday. But as we walked out into the parking lot, Lucy and Charlie asked
Hank if he would like to go to the zoo…”Sure!” he said, with a spring in his
step. I was so surprised! And so relieved. Dr. Siebert has a way with Hank and
I guess Hank just needed some sutures out and the reassurance that he would not
look like this forever.<o:p></o:p></span></div>
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<span style="font-family: inherit;">We spent the afternoon at the zoo, laughing at the prairie
dogs, gazing at the big cats and<span style="mso-spacerun: yes;"> </span>since
the camels looked like they were talking to each other, we made up their
conversations, putting the words in their mouths and cracking ourselves up. It
was great! Hot and muggy and happy. Even with the plastic still on his face,
Hank faced the day…and the stares... with courage and grace and was just
Hank…newly 13 and having a good time! He even agreed to ride the carousel with Lucy and Charlie....the three of them lined up on their animals...and Hank's long legs hanging down...priceless!</span></div>
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<span style="font-family: inherit;">Throughout the day, I would check in on Facebook to see the
flood of well wishes coming in. I would read them periodically to Hank and he
would say, “Wow!” or “Thanks!” each time. Hank suggested we go have lunch,
which was surprising, since not only has he wanted to stay home since surgery,
he hasn’t been able to eat…so this was a new thing! He struggled to fit the food in his mouth,(and ordering a burger with hot sauce probably wasn't the best idea...) but he was able to eat a little bit
of food, smile, joke around and just have some fun. Could it be that our Hank
was back?<o:p></o:p></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhKHOSEIdBw52cjFcRuDcggXcPYq22_6oDQpt_oSaqqcbhhIjZ8fsr7txIzgz5l5jEYV2lbVxT0VwZX6eTU0KthBN7Oi1AYV92Eoi_2EvWs-hSwrPMbkkZ5xCyEk9RdRwSxhr9auJDoDfAu/s1600/phone.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><span style="font-family: inherit;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhKHOSEIdBw52cjFcRuDcggXcPYq22_6oDQpt_oSaqqcbhhIjZ8fsr7txIzgz5l5jEYV2lbVxT0VwZX6eTU0KthBN7Oi1AYV92Eoi_2EvWs-hSwrPMbkkZ5xCyEk9RdRwSxhr9auJDoDfAu/s1600/phone.JPG" height="320" width="240" /></span></a></div>
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<span style="font-family: inherit;">The big gift for Hank was a phone. He has been using Jeff’s
flip phone for the last year and it is old and a pain to text with. He never
complains but has mentioned his desire for an IPhone. However, we have told him
a million times that we would not be getting him an iPhone…I would say that
having surgery and feeling so down has actually worked in his favor….I doubt we
would have given him an iphone this year…..but his mood, coupled with the fact
that he is such a good kid...definitely worked in his favor! We couldn't wait to give it to him... and after running a couple of birthday errands...I had to get him a cake...We headed back to the Ronald McDonald House and had Hank come into the dining area. We set ourselves up at a table, while the community volunteers cooked away in the kitchen. As we started to sing "Happy Birthday" to Hank, the volunteers joined in...and instead of 4 voices, there were 15! (Nice!) Hank opened some gift cards and then opened the last present...the iPhone. Speechless, he stared at it...and then with a sparkle in his eye and a big grin (as big a grin as a kid with stitches in his lip can do), he jumped up and hugged us. "Thank you! Thank you!!" he said with glee and gratitude! He immediately started texting his friends....and that is the last we ever saw of Hank. Just kidding...but it kind of feels like that when your kid has a phone... Later, Kristina and Brandon came by with a card and iTunes gift card for Hank...knowing he was getting an iPhone, they had to time it just right. </span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhotHoXU8cprRxY4TTkV5kyL7s4LgLBdT-gjg2DLRWuVTPQDnvdmEH6Unxr3VRk5wYje0_2eU8T0rzettQgm1JbQ9SjZ-ckVZOPi723LOHOUIhnzmSZnvzTUx_yUSM6DLABsejbsc_rzRLj/s1600/party.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: inherit;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhotHoXU8cprRxY4TTkV5kyL7s4LgLBdT-gjg2DLRWuVTPQDnvdmEH6Unxr3VRk5wYje0_2eU8T0rzettQgm1JbQ9SjZ-ckVZOPi723LOHOUIhnzmSZnvzTUx_yUSM6DLABsejbsc_rzRLj/s1600/party.JPG" height="240" width="320" /></span></a></div>
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<span style="font-family: inherit;">We had a late dinner and then got all the kids together for cake. And even though our group was small...it turned out just right...with ice cream and cake, laughter and fun. We plied the kids with sweets...at 9:30pm...and then had to send them down to the basement play area to burn some of it off! Hank seemed happy and more like himself than he had been for weeks...making me think that perhaps the worst was behind us...</span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgOcuztWBL_4N5g4ykleoaelk_qX1n59XTFPQj1Tq6qi0BdSn0OsFBFNgFmhEXFRpv7N5BIDRNIRI-PGA77bxucwVTSusqnsA5zx-fOxnbmlsKZc93E61vD08Bteuo2ZTZSS1Ews7Y9Dzh5/s1600/face+time.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><span style="font-family: inherit;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgOcuztWBL_4N5g4ykleoaelk_qX1n59XTFPQj1Tq6qi0BdSn0OsFBFNgFmhEXFRpv7N5BIDRNIRI-PGA77bxucwVTSusqnsA5zx-fOxnbmlsKZc93E61vD08Bteuo2ZTZSS1Ews7Y9Dzh5/s1600/face+time.JPG" height="320" width="275" /></span></a></div>
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<span style="font-family: inherit;">The next day, we were up and ready to go. Hank got to share a little "Face Time" with his friend, Jack, from back home. I heard Jack say, "Wow Hank! You look so much better than you did the other day!" (that made Hank smile)...a local pizza place donated pizzas to the house and we had a very filling lunch...and then decided to get the kids out of the house and see a little bit of Wisconsin! We headed for the "Dells", an hour drive to the foothills, full of water parks...kind of like your average water park meets Las Vegas. Showy, glitzy, touristy...and full of water slides as far as the eye can see. Would have been great, had we not had a kid who just had surgery on his face and the last thing he can do is hurl himself down a waterslide! </span></div>
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<span style="font-family: inherit;">So we found something we all could do...an amphibious "duck" tour of the Wisconsin River. You know those boats with wheels that then can just drive into the water and be a boat? Yeah...that's what we did. Not the most exciting tour, but something we have never done...and we got to see some beautiful scenery. That, coupled with a stop at the Dairy Queen for some milkshakes...rounded out our day. Later that night, I came into the kitchen to find Lucy and her Dad, having milk and cookies for a little father-daughter bonding time. Just what that little girl needed...considering she did NOT want to go on that boat tour and did it under duress. (that is what I get for letting her watch the Titanic!)</span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhc0cfkDI8t87Q98D5SulHRwrc16QdpUbk8ysT3kt1-Lmb6MaOha7gb6Bm-t5EMPp9S-iI7mWyqMXXV07G7iruPeaZ_aVGnWIpNX7509bAkWm7JVVehGuHrb3gmk_Rtppn51RCOAnf4Eedq/s1600/Dad+and+Lucy.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: inherit;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhc0cfkDI8t87Q98D5SulHRwrc16QdpUbk8ysT3kt1-Lmb6MaOha7gb6Bm-t5EMPp9S-iI7mWyqMXXV07G7iruPeaZ_aVGnWIpNX7509bAkWm7JVVehGuHrb3gmk_Rtppn51RCOAnf4Eedq/s1600/Dad+and+Lucy.JPG" height="295" width="320" /></span></a></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi08wwJ_zcO2xfrIF3Y1pKZxH2jI5vnVwOSObO_2Vtj1caMfPmrF_1viHTRbmcDsD3k-c4YM3TPU7hzWcF63iJn4XywSUlBvM-p3NNK07X71LbTTBDjY83wbK73SbKAP8221gULnNjfl9lg/s1600/sutures.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><span style="font-family: inherit;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi08wwJ_zcO2xfrIF3Y1pKZxH2jI5vnVwOSObO_2Vtj1caMfPmrF_1viHTRbmcDsD3k-c4YM3TPU7hzWcF63iJn4XywSUlBvM-p3NNK07X71LbTTBDjY83wbK73SbKAP8221gULnNjfl9lg/s1600/sutures.JPG" height="320" width="240" /></span></a><span style="font-family: inherit;"> Thursday arrived with much fanfare...one week after surgery and the dreaded plastic wrap on the face and the last of the sutures were scheduled to come out. We made our way over to the University of Wisconsin Hospital, along with Kristina and mom Karen, who wanted Dr. Siebert to have one last look at Kristina's face, before we all departed for Chicago on Friday. We quickly navigated the state-of-the-art registration process and check-in and sat down to wait for our favorite doctor. We were called back quickly and headed for the exam room. It seemed strange that there were only three of us, but with the World Cup playing, the younger kids stayed back at the house with Kristina's dad, Gene. The first nurse took a look at Hank and asked, "Is that plastic wrap on your face?" We all nodded yes. She stood up and got closer to Hank's face and tried to tug at it. "Hmm...I have never seen this before...I better ask someone else," she said and left the room. She returned with another nurse who confirmed that, "Yes it is plastic, we will let Dr. Siebert take that off," she smiled happily. And with that...both nurses left, leaving us to wait for Dr. Siebert.</span></div>
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<span style="font-family: inherit;">We didn't have long to wait. He swept in gave hugs and got down to business. "You look great Hank!" Dr. Siebert exclaimed, "How are you feeling? Ready to get that plastic off and those stitches out?" he asked. ""Yes!" Hank answered, "Finally!" And so it began...the slow process of removing the plastic off the side of Hank's face. After what seemed like forever, but was really just a couple of minutes, the plastic was off. "Better?" Dr. Siebert asked. "Better!" replied Hank as he reached up and touched his cheek. Dr. Siebert made quick work of the stitches in front of Hank's ear. The sutures along his nose were a little trickier and as Hank winced, Dr. Siebert quipped, "Good thing you have a surgeon with steady hands doing this!" Hank made a sound between a chuckle and a good natured groan and with that, "All done!" was heard. Hank sat up and let us take a look at him. Wow! He looked so good! With the exception of the swelling, for the first time in a long time...Hank looks like Hank!</span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEinAl7rOWpfEep9euN3F_pQ4TluJfFeTC30zVmcY2dviFxI4_Pn6VOAGapgMGUvLlIPcdCw9P8ilHHdDkH1ionM61ICxarAENT9RfYJwRWUKW2_aACKIAC6eW5qbJ885FAU3tLA16EV6c-n/s1600/closeup.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: inherit;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEinAl7rOWpfEep9euN3F_pQ4TluJfFeTC30zVmcY2dviFxI4_Pn6VOAGapgMGUvLlIPcdCw9P8ilHHdDkH1ionM61ICxarAENT9RfYJwRWUKW2_aACKIAC6eW5qbJ885FAU3tLA16EV6c-n/s1600/closeup.JPG" height="303" width="320" /></span></a></div>
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<span style="font-family: inherit;">We all took seats and talked about Hank's recovery, what to expect, limitations, prognosis...everything. And for the first time, Hank was a part of the conversation. Hank asked some questions..."When can I swim? When will the swelling go down?" That sort of thing. My big question was of course..."Do you think this is it?" Dr. Siebert answered in the way I knew he would...positive but cautious..."I think so...this should last him as he grows." I inquired about bone surgery...and he responded by pointing out that Hank's eyes are even and his jaw and mandible are near perfect...so the only real issue is the cheekbone...which is why the tissue was moved to that area. So maybe the tissue will mask the missing cheekbone and Hank can just live life. I know that a cheek implant of some sort is a real possibility, but at this point we just need to focus on the present and as always, but Hank in God's hands and trust that all will be OK. As we finished talking about medical stuff, the conversation switched to the Cubs game we were going to the next day. "Oh, we better check the weather!" he said, as he pulled out his phone. I watched as both Hank and he looked at their phones, searching for weather...(I don't know if Hank was really looking at the weather or playing a game, but the image of the two of them...sitting there like two old friends just cracked me up!...and in reality...they ARE two old friends...)</span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjPEGhwVumkvJCHJM-HYHnncrT6q_eRgsJIVXq-uaM5TD3Gxm7ZlkLyG-EfPYkClDR_c39RJzxj-xv7UvRg_sPgxMglHlaoG1p9n3h0cAqMpEvAWjnSK-YfOwhlQO4DIX48wMeOgsoeg7BO/s1600/techies.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: inherit;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjPEGhwVumkvJCHJM-HYHnncrT6q_eRgsJIVXq-uaM5TD3Gxm7ZlkLyG-EfPYkClDR_c39RJzxj-xv7UvRg_sPgxMglHlaoG1p9n3h0cAqMpEvAWjnSK-YfOwhlQO4DIX48wMeOgsoeg7BO/s1600/techies.JPG" height="292" width="320" /></span></a></div>
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<span style="font-family: inherit;">We took some pictures, chatted some more and then made our way out to the waiting room, where Kristina and Karen were waiting for us. Dr. Siebert took a seat across from Kristina and Hank plopped down next to him while Jeff and I grabbed seats across from Hank. He examined Kristina's face and they chatted about the swelling and when she could resume activities...conversation similar to ours. And then we all sat back and chatted about many things...it felt like we were just sitting in our living room with great friends, instead of the waiting room of a hospital 2,500 miles from home! </span></div>
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<span style="font-family: inherit;">I realize just how amazing it is that not only are we so far from home...and in the presence of greatness (because Dr. Siebert IS great)...but that our two families were able to go on this journey together!</span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhvS4ElD0ewJK6lrJKuhDCmvRx6HXXHBemk1oL0VDLeem88qXfBFoILES-bgdHVI3xrmpf1eORx_4C2mtkvB5wgbuMY3RrFgOeEW_IY-TAuKoQWnH6nWlyfv8GAhUQDXiOFkNlrNvTh5iu4/s1600/2+kids.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: inherit;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhvS4ElD0ewJK6lrJKuhDCmvRx6HXXHBemk1oL0VDLeem88qXfBFoILES-bgdHVI3xrmpf1eORx_4C2mtkvB5wgbuMY3RrFgOeEW_IY-TAuKoQWnH6nWlyfv8GAhUQDXiOFkNlrNvTh5iu4/s1600/2+kids.JPG" height="320" width="243" /></span></a></div>
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<span style="font-family: inherit;">It was a bittersweet goodbye on our part. We don't ever want Hank to have another surgery...which means we would not be going to Wisconsin again...and we would not be seeing Dr. Siebert again... But I think we WILL be seeing Dr. Siebert again...he is our only doctor navigating us through these treacherous waters. So although we won't (fingers crossed) have to come for surgery, I would think we will come back for a check-up...and take the kids back to the Dells, when Hank can actually enjoy a waterslide or two!!</span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhiJloKP2ctzMXB0E5pWjgGO1rKsZgqghD710iiEL9DC0qqOu9VYY4bDSEw4eDE_QX0UZfLtZCJAb-OIQ_3L4Dd8jREUhHLw00YQbqookmMkHOGa3Gmvj2_zUuUlnSCAhQ2Ud1sm4rP_wCr/s1600/capitol.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><span style="font-family: inherit;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhiJloKP2ctzMXB0E5pWjgGO1rKsZgqghD710iiEL9DC0qqOu9VYY4bDSEw4eDE_QX0UZfLtZCJAb-OIQ_3L4Dd8jREUhHLw00YQbqookmMkHOGa3Gmvj2_zUuUlnSCAhQ2Ud1sm4rP_wCr/s1600/capitol.JPG" height="320" width="240" /></span></a></div>
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<span style="font-family: inherit;">We left the appointment and headed back to the Ronald McDonald House for our last night there...our last night in Madison. It had already been one week since surgery! It's amazing how time can drag on so slow...during surgery and the first days of recovery...and then speed up with each day that Hank feels better! The Diaz family went off to make their own fun on their last night and we headed out to get Hank a case for his new phone. A trip to Target and Radio Shack completed the task and then we headed downtown for a last look at the beautiful University of Wisconsin and a tour of the state Capitol building. Fun fact: the exterior of the Madison Capitol Building is a replica of the Capitol building in Washington DC. (No wonder, it looked familiar!)</span></div>
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<span style="font-family: inherit;">We had our last dinner in Madison, at the Ronald McDonald House. Hank had a chance to go into the "game closet"...a room filled with donated toys and games, for the kids who stay at the house. And then all three kids settled down for a quiet evening in the room, laying on their beds and playing on their tablets, while I packed the family up for our early morning departure to Chicago. Of course when the Diaz kids came back, Lucy ran out to join them for some board game play...Kristina and Lucy have hit it off and a strong friendship has formed!</span><span style="font-family: inherit;"></span></div>
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<span style="font-family: inherit;">As I finally laid down to get some sleep, I reflected on all that we had been through in just over a </span><div class="separator" style="clear: both; text-align: center;">
<span style="font-family: inherit;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEifT6iAQzl2z2No0WKjGQgl8g8YbtcFcelgp-_yrNB2VmcrAx9E2-k6U1G0-vxqVYFvtuODBY84_28b7DnrpGYyyhwAVSb88EsckApn6uxBYICgRHEx9IEYVY58bWVEL7iLgg_SWotvzkZQ/s1600/Hank+and+DAd.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEifT6iAQzl2z2No0WKjGQgl8g8YbtcFcelgp-_yrNB2VmcrAx9E2-k6U1G0-vxqVYFvtuODBY84_28b7DnrpGYyyhwAVSb88EsckApn6uxBYICgRHEx9IEYVY58bWVEL7iLgg_SWotvzkZQ/s1600/Hank+and+DAd.JPG" height="320" width="307" /></a></span></div>
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week's time. Jeff's Birthday, tornadoes, surgery, Hank's difficult recovery and depression...Hank becoming a teenager...forging new friendships and seeing old friends...excited to head to a Cub's game, but wondering if a few more days of rest would be better...and appreciating the good people who work at The Ronald McDonald House and the amazing community of Madison who support it. That although I hate that Hank has Parry Romberg Syndrome and all that he has to endure...it is not lost on me, that everything happens for a reason...and if we weren't in this position, we would never have met the amazing people who have entered our life BECAUSE of Parry Romberg Syndrome.</span><br />
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<span style="font-family: inherit;">Hoping that tomorrow's Cubs game at Wrigley Field will bring new and happy experiences for Hank, so that when he remembers this trip, the fun is what he remembers and the pain is a distant memory!</span></div>
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<span style="font-family: inherit;">Let's go Cubs!!</span></div>
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<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: inherit;">The "Wisconsin Ducks" Tour of the Wisconsin River</span><br />
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<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: inherit;">Hank was blessed with more cards and birthday gifts!</span><br />
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Terrihttp://www.blogger.com/profile/03013764786276300558noreply@blogger.com3tag:blogger.com,1999:blog-8956351798752751809.post-69585631329039490472014-06-23T23:45:00.000-07:002014-06-26T23:58:13.310-07:00Post-op Depression...<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left;"><tbody>
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<tr><td class="tr-caption" style="text-align: center;">Miserable...</td></tr>
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Day four post-op and Hank's recovery is slow. He doesn't want to come out of the room...in fact, he doesn't want to get out of bed. This is a new one...he has bounced back quicker in the past...and I don't know if it's his age...on the cusp of being a teenager...(Tomorrow!!) or if it's the fact that he's had so much done this time and the recovery is just harder. Dr. Siebert took tissue off the underside of Hank's tongue and placed it in his upper lip...It's an ingenious technique, but makes eating nearly impossible and I can't help but wonder if Hank's recovery is so slow because he isn't getting enough nutrition?<br />
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In an effort to get some nutrition in him, I just made a trip to the grocery store in search of "Carnation Instant Breakfast" and "Ensure"...poor kid is going to have an interesting milkshake! As I was driving back, I had a thought...Going to the store is so normal... driving the car is so normal...carrying your groceries into the house is normal...But going to the store in Wisconsin when you live in California is not normal...driving a big rented Suburban feels strange...Home is the Ronald McDonald House is just surreal. That's what this whole thing is...surreal. You would think we would get used to this...but no...still can't believe that this is what we do. We travel for surgeries. Poor Hank...I hope that this is the last surgery! Or at least the last one of childhood! Five surgeries is just so much...and seeing Hank in pain and unhappy is too much for me! <br />
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Hank was asked during his hospital stay, "Do you ever think about your Parry Romberg Syndrome?"<br />
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Hank responded, "Yes." When asked, "How often do you think about it?" Hank's answer: "Every day." Ugh...I tried to keep a poker face...but my heart shattered. Here I thought Hank probably never thinks about it. We don't really talk about it...unless we are doing a surgery or something... "So what do you think about that, Mom?" I was asked, "I didn't know that Hank thinks about this every day, " I said, "but why wouldn't he? I think about it every day." We sat in silence for a minute and then Hank was asked if he knew I think about it all the time, "No...I didn't know." I realized at that moment that all my fears about what this condition was doing to him...beyond the wasting away of his face and the surgeries...what has this disease done to his self confidence or his quest for "normalcy". These are new unchartered waters...teenage years and grown up feelings. <br />
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<tr><td class="tr-caption" style="text-align: center;">A fun "Get Well" gift from Hank's former teacher</td></tr>
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Day 2 after surgery was Saturday. Hank did not feel well at all. His pain level was consistent and we had to medicate. His tongue was too swollen so he could not take in solid food, but was able to use a straw, which is good. The highlight of his day was getting a package from his former kindergarten teacher, Robin Neilssen. Robin sent a package of "Chips Ahoy" cookies along with a card that had the definition of a Tough Cookie on it: 1. Someone with just the right mix of sweetness and strength. 2. One who doesn't crumble under pressure. 3. A fighter who's too busy kicking butt to sit down and cry, but know it's okay to do both. 4. A person who doesn't always ask for support but has lots of friend who would do anything to help. Perfect! Hank really is the exact definition of a tough cookie! Also enclosed was a letter...the same exact letter that we prepared for Robin on the first day of Kindergarten! Attached was a photo of Hank, at age 4...and a drawing he did. What a precious memory and a perfect time to get it! Hank was so pleased...and has been guarding the cookies from his family...since he can't eat them yet...neither can we!<br />
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<tr><td class="tr-caption" style="text-align: center;">Anointing of the sick</td></tr>
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Hank rested all day Saturday, with a few trips to the kitchen periodically. Sunday was much of the same. He didn't want to get out of bed, and barely made it to the kitchen. I realized that Hank is depressed. Hmm...should I be surprised? I think I would feel the same...<br />
We let Hank lay around all day...until afternoon...but Sunday is a church day and we wanted to go to Mass and thank our Lord for getting us this far...and for Hank's surgery and recovery. Hank wasn't wanting to go...but when we said we were going to the little chapel at the hospital, he agreed. Kristina's family went too, and all nine of us made up half the congregation. After Mass, I asked the priest if he would bless Hank and Kristina as they were recovering from surgery. He quickly agreed and got out his "priest kit". He anointed each child with oil on their foreheads and then the palms of their hands. He prayed over both for a speedy recovery and peace of mind. Hank seemed to be in better spirits as we thanked Fr. Diego and headed back to the Ronald McDonald House.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiBoOxTq4qsBfi7IR8LksMgb3aEyr9Yp4kuR3fuiLi8CfZxCDeZKJ2Qjplz4UCj9Jm3bhcU2QrTGAGORvIcWfPKf5feSoHzVSjvggIsPeVmn5PmUkf-GXZ0tDqJYs1IS58tsbqRB4zTUtJe/s1600/Dog.JPG" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiBoOxTq4qsBfi7IR8LksMgb3aEyr9Yp4kuR3fuiLi8CfZxCDeZKJ2Qjplz4UCj9Jm3bhcU2QrTGAGORvIcWfPKf5feSoHzVSjvggIsPeVmn5PmUkf-GXZ0tDqJYs1IS58tsbqRB4zTUtJe/s1600/Dog.JPG" height="320" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Hank and "Sully"</td></tr>
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The kids got a fun treat that evening, when some therapy dogs stopped by for a visit. Bella a bulldogand Sully a Chinese crested powder puff. Sweet dogs with great dispositions that seemed to enjoy all the love. It was great for the kids, especially our kids...who have been missing our border collie, Maverick. (I don't know why they would miss him...he's old and crabby and growls when the younger ones try to pet him!) Hank stuck around for a little while and then retreated back to the room...<br />
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Since we have not yet acclimated to Wisconsin time and are still on California time...late night snacks are the norm for us. Hank was hungry, and since eating is a challenge, we all went down to help. Applesauce, pudding, yogurt...juice...that was about it. He decided that he didn't like my smoothies...and the pain in his mouth prohibited anything else. As we sat together, we talked about his birthday and maybe we could go do something..."Maybe..." he said. What's this? A glimpse of hope? He already passed on going to the dairy at the University, so Charlie, Lucy and I went...and of course we brought back milkshakes for Hank and Dad...But the last thing I wanted was for Hank to sit in the room all day on his BIRTHDAY!<br />
Well, at least I knew we would get out for Hank's doctor appointment...maybe getting some stitches out will make things better. One can only hope... Besides, I know the medications can make him a bit melancholy and he was taking less and less...<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiThLOS-pvKp0jLYyH3Tb2AOquPNT6xqqJmNXEXzS55FYhnW4kMcRD6O6XEd2qXZT_hDsDruNMN8JAknfLPo5i0GuzE8KCt-7IX3q-XbqqfPmaFD-HELZcP-OkbrGRPwrjxFckGMcP-2cfA/s1600/Ronald.JPG" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiThLOS-pvKp0jLYyH3Tb2AOquPNT6xqqJmNXEXzS55FYhnW4kMcRD6O6XEd2qXZT_hDsDruNMN8JAknfLPo5i0GuzE8KCt-7IX3q-XbqqfPmaFD-HELZcP-OkbrGRPwrjxFckGMcP-2cfA/s1600/Ronald.JPG" height="224" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Stop watching me!</td></tr>
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I have more to write...but I am stopping here. From where I am sitting in the kitchen, I have a perfect view of Ronald McDonald on a bench. I keep catching him from the corner of my eye...it's unnerving. I have been texting with my sisters while I sit here and write...and one of them teased me by telling me that Ronald roams around at night...That's it! I am sure that he is watching me right now and it is freaking me out! Ronald is a good clown...as far as clowns go...but I am not prepared to be confronted with anything clown-like on this trip!<br />
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Tomorrow will be a great day! We are getting up early to decorate the dining room and kitchen. Lucy made birthday signs for Hank and we are ready to hang them up. We have a few surprises up our sleeve for Hank...and know he'll enjoy himself! We will get a smile out of him for sure!<br />
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<tr><td class="tr-caption" style="text-align: center;">Last night of being age 12!<br />
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Terrihttp://www.blogger.com/profile/03013764786276300558noreply@blogger.com1tag:blogger.com,1999:blog-8956351798752751809.post-82957362508433407272014-06-21T13:00:00.000-07:002014-06-22T08:27:49.433-07:00Surgery #5 and The Wearing of the Green<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjYWrY0b2crrQY2YQybmFv5QDanHyTQFrLN9y06LZHztfk40Ork1NEcIXwtjVOS2wgF388ya7P04FTkip1do80XsfynMxT0QPPSwFDXdNj51dLOwVLTZaxoeCWrRX_ceahObYkooLrVh7tv/s1600/green+family.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjYWrY0b2crrQY2YQybmFv5QDanHyTQFrLN9y06LZHztfk40Ork1NEcIXwtjVOS2wgF388ya7P04FTkip1do80XsfynMxT0QPPSwFDXdNj51dLOwVLTZaxoeCWrRX_ceahObYkooLrVh7tv/s1600/green+family.JPG" height="150" width="200" /></a>The alarm going off at 5am was a rude awakening for surgery day. I dragged myself out of bed and quickly got ready so Jeff and I could get the Hank and the other kids up. (Where one goes...we all go). Everyone put on their green, including Hank, as we were all "wearing green for Hank" and hoped others would too! We got to the hospital shortly after 6am and made our way to the third floor Surgery waiting area.<br />
After checking in, it wasn't long before they were bringing us back the pre-op room where we would be until Hank went in for surgery.<br />
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Hank was in great spirits through all the pre-op stuff of vital signs, nurses, doctors, etc. He laid in the<br />
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bed in a light blue hospital gown...he is now too tall for the pediatric pajamas...The nurse asked Hank if he would like the liquid that relaxes them before heading in to surgery. He said he didn't want it and would prefer to just go under when he got there. Hank had a few concerns and voiced them: "I don't want to wake up during surgery," he said, "And please make sure I wake up afterwards.., and oh, I don't like the goop they put in my eyes, please rinse it out." Time seemed to move swiftly as we met each team member: surgical nurses, anesthesiologists, residents and then finally, the man of the hour: Dr. Siebert! He came in with two associates in tow, explained what he was going to do, placed his initials with a Sharpie on Hank's left temple (to make sure they operate on the correct side), took a quick picture with Hank for our "Before" shot, gave Hank a high five and said, "OK, see you in a few!" I quickly put on my paper jumpsuit, shoe covers and hair cover, and prepared to accompany Hank to the operating room.<br />
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The goodbyes were quick and tender as Hank hugged Lucy and Charlie and gave his Dad a squeeze. "We love you Hank," they said in unison. The nurse and the anesthesiologist each took grasp of Hank's bed and we were off, rolling at a good clip, down the halls and through double doors. They chatted with Hank as we went, with me trying to keep up at Hank's side.<br />
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We pushed through the last set of double doors and into the operating room. I stood back as they got Hank's bed next to the table. He scooted onto the operating table as the doctors and nurses chatted with him. Hank chatted easily with them and answered their questions. There was no fear...at all. </div>
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I leaned down and gave him a hug and he wrapped his arms around me, giving me a pat on the back.</div>
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I realized that he wasn't the one who needed comforting at that moment...I was the one...and we both knew it. Stoic and fearless...the doctor placed the mask over his face and talked to him as the narcotics started to take effect. "Give him a kiss Mom!" said a nurse, as I sat by his side. I gave him a kiss and told him I loved him. "I love you too," he said in a sleepy voice. I watched his eyes slowly close and then reopen as he struggled a bit against it. "It starts to smell funny, doesn't it Hank?" said the anesthesiologist as Hank's eye fluttered. "Sorry about that! Does it smell like your little brother's dirty socks?" Hank let out a little laugh and that was it. He was out. I felt my heart leap into my throat and the tears welling up in my eyes as the nurses looked at me with empathy and the one next to me placed her arm around my shoulders. "We'll take good care of him," she said as she turned me towards the door. I stopped and took one more look back, not wanting to forget the scene. <br />
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As we headed through the doors and down the hall I asked, "Where is Dr. Siebert?" Realizing he had</div>
not been in the OR when I was. At that moment I heard a commotion of voices as Dr. Siebert and his two associates came around the corner and headed towards us. "There you are!" I said as he approached. "I had to check on another patient," he exclaimed happily. "Are you OK?" he asked. I nodded as he gave me a hug. "Don't worry, he'll be fine!" he said, "we'll take good care of him." "I know," I replied, "I'm not worried, it's just hard to leave." "See you in a little while!" he exclaimed as they hurriedly headed down the hall. <br />
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I was brought back to the room we started in and reunited with the rest of the family. "How did he do?" asked Jeff. "Like a champ!" I said, as I started to cry, "he showed no fear...so strong." We now had at least two and a half hours to wait. We were given a pager that looks like the pagers they give you at restaurants to let you know your table is ready. Except that this one has a screen that the OR sends text messages to. The first message came through about 45 minutes later: "Surgery has started. Hank is doing well at this time." We headed to the cafeteria to get some breakfast and coffee. The second message came an hour and a half later, "Surgery is progressing. Dr. Siebert is still working." By now, Kristina's family had arrived and were in the room next to us. We had the chance to visit a bit, and then headed to the waiting area outside the surgical rooms. <br />
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Kristina's mom, Karen and little brother Brandon, joined us in the waiting area, where we could plug<br />
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<tr><td class="tr-caption" style="text-align: center;">The Neilssen Family in Indiana</td></tr>
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in our devices and connect with the outside world. We compared notes, chatted and tried not to stress out over what was happening with Hank and what was to come for Kristina. (so nice to have the support of a friend who is going through the same thing) My Facebook was blowing up with all the photos of people posting their pictures in green! What an amazing blessing and distraction for us, as we watched the photos pop up and the sweet messages for our boy! I couldn't wait to show him! <br />
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As two and a half hours came and went, we got our last message from the OR: "Surgery is finishing up. Please return to your Pre/Post". That's all I needed to hear, we grabbed our stuff and headed to the room. It was another 30 minutes before we heard from anyone. Finally a nurse came in and said that Hank was heading to recovery and they would come and get us once he was awake. I tried to get in to see him earlier, but she wouldn't budge. We had to wait until we saw Dr. Siebert anyway...but it was worth a shot.<br />
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A little bit longer and here came Dr. Siebert, big grin and exclaiming, "Hank did great!" He sat down on the only available seat...the trash can, and told us the details. He talked about the incision sites and how he debulked the jawline and rearranged the tissue around the eye and cheekbone and between the mouth and nose, as well as the work done to give Hank the left side of his upper lip, which had been missing. "Hank is going to be mad at me," he said shaking his head, "the mouth stuff hurts for a couple of days...he is going to be mad!" (For the record, Hank is not mad...and has never been mad at Dr. Siebert). He talked with us for quite some time, and then headed off to see Kristina, to get her ready for surgery, while we waited to see Hank. <br />
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At long last, a technician came in and got us, "just one parent at a time," she said. "You go," said Jeff, knowing how eager I was. I followed her through the double doors and into the recovery room, where Hank laid in a bed behind a curtain. His eyes were closed but he murmured when he heard my voice. "He's in a lot of pain," said the recovery room nurse, "I am trying to get it under control for him." I reached out for his hand and told him how good he looked. I explained that he had an incision over his eye and his eye looked swollen shut, and he had the plastic wrap on his cheek to minimize swelling and hold everything in place.<br />
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As I looked at him, I noticed the tears, escaping under his closed lids, down his cheek and pooling in his ear. I asked her for a tissue and she handed me gauze. "I'm just going to get this little bit of liquid out of your ear," I told Hank. I blotted it out, tears mixed with blood, and felt my heart give that familiar lurch that I feel, seeing Hank after surgery. I held his hand and watched the monitors...heart rate, oxygen level, blood pressure...the oxygen tube running to his nose, the drain coming out of his head, the IV in his arm...this boy has done this five times...this strong, resilient, courageous boy...I felt the surge of pride and pain all at once, just wishing that things were different and knowing they can't be.<br />
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The nurse slowly got Hank's pain down to a manageable level, so I switched places with Jeff, giving <br />
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him a chance to be with Hank. Soon, they came and got Lucy, Charlie and I, and we gathered our stuff and Hank's too, and followed Hank, bed and all, into the elevator to go to his room. Last time we were here, Hank got pushed over to the adult hospital...not what we wanted...not kid friendly and for the parent staying with him...difficult. ("Hello bathroom!"...or should I say "Toilet behind the curtain"?) But this time...his room was wonderful! Maple color cabinetry and floors, muted and beautiful in blues and greens. As Hank got settled in, Lucy and Charlie stood by his bedside, watching the monitors, listening to the nurses talk and soaking it all in. The nurse explained the pain system to Hank...0-10, with 10 being the worst. "what is your pain level now?" she asked, Hank held up both hands, "Eight? You are at a level eight?" Hank gave a nod. I took the nurse aside, "This kid has a high tolerance for pain," I told her, "If he says it's an eight...guarantee you...it's a twelve for someone else." "Got it!" she responded, "Thank you for telling me. It makes a difference." <br />
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We sat in Hank's room, talking to him, while Lucy gave him the picture she colored while he was in surgery. Hank reached up to thank her and pulled her down into a hug. Lucy and Charlie were concerned and Lucy came to me and whispered, "I hate seeing Hank in that bed...poor Hank." I felt the same way...a little later, Dr. Siebert came by to see Hank. "Hi Hank!" he said with a big smile! "How are you feeling? Are you mad at me? I know the mouth stuff hurts!" Hank mumbled that he wasn't. Hank's left eye was swollen shut, and Dr. Siebert leaned down to look at it, "How's that eye? Can you see out of it?" he asked as he reached down and gently popped the lid open. "Oh HI!" I exclaimed as Hank looked at us with both eyes! He didn't realize he could open it! Dr. Siebert explained to Hank what he had done in surgery and asked Hank what he thought. Hank gave him two thumbs up and what passed for a smile. I asked him to pose with Hank for the "After Photo". "If anyone asks what happened, Hank, just say...You should see the OTHER guy!" Hank gave a laugh and they posed for the photo. <br />
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The rest of the afternoon and evening consisted of us trying to keep Hank comfortable and pain-free.</div>
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He couldn't eat because of his tongue and lip...we could get him to sip water and I marked down the </div>
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<tr><td class="tr-caption" style="text-align: center;">L: Morning photo pre-surgery/ R: Afternoon photo post-surgery</td></tr>
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amounts on the board after each time. He began to feel nauseous...this was a new one. Hank has never been sick from anesthesia. "I'm going to be sick!" he exclaimed as I scrambled around to find something. I found a bucket/bowl thing in the bathroom and put it in front of him. Oh, how I was regretting staying behind as Jeff took Lucy and Charlie to the cafeteria for food. I am pretty stoic myself...but I am not good with vomit...which has made those times in motherhood quite difficult...when someone throws up...I throw up! "Hold it together!" I told myself, as Hank became violently ill, throwing up every last drop of water we had given him over the last few hours. I got a washcloth and wiped at his mouth and nose. The nurse took the bowl and gave him a new one. "Oh....she said...I don't think he is sick from the anesthesia..." Apparently Hank had swallowed quite a bit of blood during the surgery and it had come up with the water. I later found out that of all things that the body can't handle is blood in the stomach. After that, Hank felt better...his pain level never went lower than a seven, but he started to get hungry and was able to keep water and apple juice down.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgLvaa7ox4S2ypr7ui4hZQ8PbGzj0uuCAIJZ97Cl7hSiyJNLq-hxQvLWpAuuMdf3E20k4G1Bj2UhRskeSLj6ZMObc57Pvny9qYL62IduELkEiMsujXeqnJKnxC-zvyBdkUGwSKNYsGGGUP4/s1600/Room+Number.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgLvaa7ox4S2ypr7ui4hZQ8PbGzj0uuCAIJZ97Cl7hSiyJNLq-hxQvLWpAuuMdf3E20k4G1Bj2UhRskeSLj6ZMObc57Pvny9qYL62IduELkEiMsujXeqnJKnxC-zvyBdkUGwSKNYsGGGUP4/s1600/Room+Number.JPG" height="240" width="320" /></a>Dr. Siebert checked on Hank again, later in the day. He filled us in on drain removal and when we could go home. He talked with Hank a bit and then was off!<br />
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Hank continued to have pain at a level seven for the rest of the day and night. He was able to keep the apple juice and water down...had a little bit of pudding. He was in and out of sleep, waking up long enough to read a text from a friend and then sleep again. The kids asked who was going to stay the night with Hank. Before I could show them my bag, packed for an overnight stay, Hank replied, "Dad." What? DAD? Ouch! "It's just that you stay every time, Mom," said Hank, feeling my disappointment emanating through the room, "Please don't be offended." What could I say? Of course my feelings were a bit hurt...but I get it...a boy needs his Dad...but really? I have to stay at the hospital when the only real bathroom is down the hall through two sets of double doors? And Jeff gets to stay when there is a fold out bed, and full bathroom with a SHOWER? Figures.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiBT5HsRXcw5Tq4Aby-0xb7vDZrihvy6xSVRG5JZKLEnBH-y27L9p7Yx0Geny1DebcS4Nuspx4bwicfcqr7rkdVxHrEywI6R5GCap8Zj0CK_IJsL36oL8gCYSsEMn4wsj4bHP_vbpAqOFs5/s1600/Thomas.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiBT5HsRXcw5Tq4Aby-0xb7vDZrihvy6xSVRG5JZKLEnBH-y27L9p7Yx0Geny1DebcS4Nuspx4bwicfcqr7rkdVxHrEywI6R5GCap8Zj0CK_IJsL36oL8gCYSsEMn4wsj4bHP_vbpAqOFs5/s1600/Thomas.jpg" height="320" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Cousin Thomas and dogs all in green!</td></tr>
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Jeff went back to the Ronald McDonald House to get a few things while I showed Hank a few photos of the many people who posted their photos of themselves, family members, co-workers and even dogs wearing green! He chuckled and made small noises of appreciation. I told him I had lots more, but we could wait until he felt better. The nurse and I got Hank up, so he could use the restroom. When he was done, I came in to help him back to bed. He was looking in the mirror and had his hand on the plastic wrap on his face. He looked at me with tears in his eyes and turned and wrapped his arms around me. "I'm sorry Hank," I said, trying to keep my own tears at bay, "Is it the pain?" He shook his head, "Is it how you look?" He said, "It's all of it." UGH...how many times can a mother's heart break? This is the worst! I told him that it would be better in a few days and in the long run, he would be so happy about it...I held him until I felt him relax. This is just too much for a 12 year old to have to deal with! We got him back to bed just as Jeff and the kids returned.<br />
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It was getting late and we still hadn't seen Kristina! Lucy said she would like to come with me, so Lucy and I met Karen at the elevators and she brought us back to Kristina's room. Wow! Kristina looked great...and she was sitting up eating spaghetti! I felt a twinge of envy as I saw how good she was doing and how hard everything was for Hank. But then I remembered Hank's third surgery...it was out-patient and he was eating pizza that first night...so I understood...just wished Hank was doing as well. Lucy started feeling anxious, wanting to be with Hank. We said our goodbyes and headed back down to Hank's room. <br />
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The kids were tired, I was tired...but we didn't want to leave. Charlie laid down on the couch and Lucy sat on Jeff's lap. Hank was asleep once again and I checked Facebook to see all the new photos. Suddenly Lucy broke out in tears. "What is wrong?" Jeff asked. "Oh...poor Hank!" she cried. "I feel so bad for Hank!" Jeff consoled her and rocked her as she sobbed. That makes three kids who shed tears today, since a little earlier, I had found Charlie curled up in a ball, sobbing over Hank. These kids were at the hospital from 6 am to the now 9 pm and were wrung out and exhausted...emotionally and physically. I gathered them up, we said our goodbyes and headed out to the Ronald McDonald House.<br />
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Charlie fell asleep the minute his head hit the pillow. Lucy cried in my arms over her brother, until she finally passed out. I laid there, worrying about Hank and Jeff, hoping they would get some sleep...and listened to the very loud phone conversation taking place in the room next door. I now know that woman's whole story...now if I could just figure out which one she is...<br />
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The next morning, Jeff sent a text telling me they were taking the drain out of Hank's head. Hurray! That was a good start to the day. However, Hank's pain level had shot up to a nine and they were fighting to bring it down. Jeff told me to stay away for the time being, as Hank didn't need his siblings there. Jeff finally said that he would walk back from the hospital so I could go up and see Hank. I headed up as soon as he got in, and walked the five minute walk to the hospital's front doors.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh4jTUk_urQ9ZjkZ74Qh1UrSlPBDIPua0t28G4ZYhh3UEb1j3kp_Xgi_KRudc6HFpRZlAXrJUV4hIpVR7dGxwjsFc59T6ne7-vm0Jf2vVPHnIqbcUGBc58Cjbn6_TUxYKgqGXsPJyGeqhGa/s1600/Next+Day.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh4jTUk_urQ9ZjkZ74Qh1UrSlPBDIPua0t28G4ZYhh3UEb1j3kp_Xgi_KRudc6HFpRZlAXrJUV4hIpVR7dGxwjsFc59T6ne7-vm0Jf2vVPHnIqbcUGBc58Cjbn6_TUxYKgqGXsPJyGeqhGa/s1600/Next+Day.JPG" height="320" width="219" /></a>Hank was asleep when I got there and I met his new nurse, Bill. I immediately liked Bill. He knew his stuff. He had managed to get Hank's pain all the way down to a three or so. Had Hank off the IV pain meds for 8 hours and was focused on getting Hank to where he needed to be in order to leave the hospital. When Hank woke up, his pain level was way down. I ordered him a fruit smoothie and we talked and hung out. I saw through Facebook that Kristina was released earlier that morning and was now chatting with Ronald McDonald, who stopped by to visit the kids at the House. (I am not fond of clowns, so I think I am OK with missing it!) However, Lucy and Charlie sent me a nice photo...</div>
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Dr. Siebert's resident showed up a while later and asked Hank if he wanted to go home or stay. "Home!" Hank exclaimed. Ok, you need to walk around a bit first. Hank was given another dose of pain meds to manage the pain and he got himself dressed as Jeff and the kids showed up. <br />
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We did all the necessary paperwork, met with the pharmacist, ordered Hank a couple of fruit smoothies for the road, and prepared to go. But first Hank had to prove he could get out and walk and be steady on his feet...so we took at walk to the elevators and headed downstairs to get his prescriptions. Hank was hilarious. His hair was messy and as we walked by the nurses station, he turned and said, "I know I shouldn't be going out like this...my hair is a mess!" What a far cry from <br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgehtfGLDjUU8NNaTlpdas1cghgN_NoUMJNNYz2ANflc0ElAi5PX9F73C07oMZdvdIySFm1gOWJfhBF5c362meLRNszRSJYMfH_PRDhSwVxg0sK3fuRypkyetuv69m23f-pYO-US1Jc7_-y/s1600/Hank+and+Bill.JPG" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgehtfGLDjUU8NNaTlpdas1cghgN_NoUMJNNYz2ANflc0ElAi5PX9F73C07oMZdvdIySFm1gOWJfhBF5c362meLRNszRSJYMfH_PRDhSwVxg0sK3fuRypkyetuv69m23f-pYO-US1Jc7_-y/s1600/Hank+and+Bill.JPG" height="320" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Bill the awesome nurse and Hank!</td></tr>
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past surgeries, where he hid his face. This time he was making a big joke of it! The nurses thought it was a good joke and he left with a bit of a swagger...At the pharmacy, he asked the girl at the counter for a comb, because his hair was a mess and he was a bit embarrassed by it. So glad his sense of humor has remained intact! We made it back to the room with no problem, once again Hank amazing me with his strength.<br />
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With everything in hand, Hank was released from the hospital! It was about three in the afternoon...as we headed out the door. His nurse, Bill, had been joking around with Hank the whole time...both of them giving each other grief. Just what Hank needed! No wheelchair for Hank...he walked on out of there! <br />
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We went straight to the Ronald McDonald House, where Hank promptly got into bed, turned on his Tablet and started reading. Already, he seemed more relaxed. Now, I would like to say that this is where the day ended...relaxing at the house, monitoring Hank's medications and pain levels...keeping him comfortable, getting him to eat...and while that is all true...our lives are way more exciting than that! <br />
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Earlier in the afternoon, Jeff had noticed an inflammation on Charlie's leg. We decided we better keep an eye on it...and so that night we checked it again. Good Lord! What was that? It was swollen and hot to the touch...and it was 9:30 pm! Jeff said we needed to take him to the ER. "Oh, I said," it can wait. So Jeff drew dotted lines around the inflamed area. About 20 minutes later, we looked at Charlie's leg...the inflammation had grown well beyond that dotted line. I grabbed my purse and keys, "C'mon Charlie! We're going to the hospital!" Charlie was less than thrilled as he trailed behind me.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgOqteoo1jqqDYAVonCMwmTSfSzTI4Fx53cgBiZcPzqikv2xweETZ5WWll4CyVG3pfp_9s3q_NUaUAxojXJlZmoMSSEP2ELjpQtMF68sBueKOZm6sudk7p9-TPmlnDuXD-yxXX-Hd_KjXEO/s1600/Charlie's+leg.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgOqteoo1jqqDYAVonCMwmTSfSzTI4Fx53cgBiZcPzqikv2xweETZ5WWll4CyVG3pfp_9s3q_NUaUAxojXJlZmoMSSEP2ELjpQtMF68sBueKOZm6sudk7p9-TPmlnDuXD-yxXX-Hd_KjXEO/s1600/Charlie's+leg.JPG" height="234" width="320" /></a></div>
Seriously? Didn't we just get one kid out of the hospital? Now I was heading in with another one. Two doctors looked at Charlie's leg, but couldn't decide if it was anything...should they give us antibiotics or should they send us home? In the end, they said it was infected...called it Cellulitis, gave him a dose of antibiotic and a prescription to fill the next day. It was midnight before we got home. As I finally laid my head on the pillow...I reflected over the last two days...I know they say that God doesn't give us more than we can handle...but sometimes I wish God didn't think so much of me!Terrihttp://www.blogger.com/profile/03013764786276300558noreply@blogger.com0tag:blogger.com,1999:blog-8956351798752751809.post-53352376572485737952014-06-18T23:30:00.000-07:002014-06-19T06:26:16.307-07:00The Road To Madison <span style="font-family: inherit;">It's midnight... and I am wide awake. In just 6 hours, we need to be at the hospital to start the pre-op process. Hank's surgery is at 7:30 am, and I am starting to feel the anxiety. Hank, on the other hand, is in great spirits! In fact, he and Jeff are downstairs, raiding the refrigerator at the Ronald McDonald House...cut-off time for eating...</span><br />
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Hard to believe that surgery day is here...the road to getting here was quick and busy with <span style="font-family: inherit;">fundraisers, birthday parties, packing, driving and flying!</span><br />
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<tr><td class="tr-caption" style="text-align: center;">The Gibbs kids and Roide Kids</td></tr>
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<span style="font-family: inherit;">The "Pizza with a Purpose" fundraiser for Hank</span><span style="font-family: inherit;"> last Tuesday was amazing! With only 6 days to plan
it and get the word out, I was worried that no one would show up. But with the
help of friend Jaime, who got her radio stations to play PSA’s about Hank, the support of Old Mission School, and the power of Facebook and
our amazing supporters posting about it, the turn out was more than we could
have hoped for! </span><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjaAElK2Ox3l4RrxzOm-n60JHaw0X_UgIdnwvr3dWRfDRtQ_pBFOOTR7IwVtDgnI6jp19GBcpTGNvRS3deL4Qfn4-kB3CGne7yDrz7uAcAJAwngnS6IQbBqli14DZr-WotSt02Z7kBU3NIR/s1600/CPK+waitstaff.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjaAElK2Ox3l4RrxzOm-n60JHaw0X_UgIdnwvr3dWRfDRtQ_pBFOOTR7IwVtDgnI6jp19GBcpTGNvRS3deL4Qfn4-kB3CGne7yDrz7uAcAJAwngnS6IQbBqli14DZr-WotSt02Z7kBU3NIR/s1600/CPK+waitstaff.jpg" height="206" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Incredible staff at CPK</td></tr>
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We kept the California Pizza Kitchen busy from open to close, filling the restaurant and causing the wait staff to sweat it out all day! I think we blew the kitchen up at lunchtime and we packed the place at dinner. One waiter told me that in the 18 years he had been with the company, he had NEVER seen a fundraiser like ours! We can't thank everyone enough for their huge show of support for Hank and our family! Hank was so pleased and that show of support changed his attitude... he has been ready for the surgery ever since! We raised $845.00 that night, which was more than we expected. The restaurant fundraisers usually don't make that much, since only 20% of the bill goes back to the beneficiary. So the fact that we made that much...very amazing!<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjF10s0sajb-ds_uEij44DhWPLa-_EQljUwKkNZN1n8WKahaDVV0XGc1t23fdhdMc4TbCSZE6jYA4ZjQ4xlPvqJM0KuW1JVKv8iCD8krmjyPzdbfu7jrBsH2jjqJeNZKFnLh7i5RXUtxKhA/s1600/Bday+%2313.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjF10s0sajb-ds_uEij44DhWPLa-_EQljUwKkNZN1n8WKahaDVV0XGc1t23fdhdMc4TbCSZE6jYA4ZjQ4xlPvqJM0KuW1JVKv8iCD8krmjyPzdbfu7jrBsH2jjqJeNZKFnLh7i5RXUtxKhA/s1600/Bday+%2313.jpg" height="197" width="320" /></a>Hank will turn 13 while we are in Madison. So of course...he wanted a birthday party before we left! (that's not stressful or anything). He decided he wanted a slumber party...but our upstairs is small and it was last minute, so he invited just a handful of friends. Lucy and Charlie decided to run for cover at their Granny's house, giving Hank some much-desired privacy and room to spread out with his friends. Moving to a new school this year was scary...especially in 7th grade, but the entire class is wonderful and he has some great friends. It was the easiest party we ever had! The park is nearby, and they ran down there to play basketball, Jeff Barbequed dinner for them, and then it was video games, movies and a little doorbell ditching. The perfect party for 13 year old boys! I gave up on them at 2am and went to bed. They pooped out about 4am and were up early to play more games... so with minimal sleep, we started our weekend of packing and preparing for departure.<br />
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Father's Day snuck up on us and although we wanted to do something special for Jeff, we ended up just<br />
going to church and then to a great burger place for lunch. Of course, I had to have Hank blessed, heading into surgery and all...and Fr. Russ at the Old Mission was more than happy to send Hank off with a blessing for a successful surgery and speedy recovery! And then it was back to packing!<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgIVVSt4InZNCb0TL1OLIT9k37CLm-DvXIQ_KU2qMBUyQ16dlqR8KGbRE4sjT0A_kQdBoXxt5QCSQVXxK4kM9J9h5FHsUGellLwyL2DJPBpJHyRMZ8KYSr4OKdjSZKcdw-66EZB9vjqwiE-/s1600/Flight.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgIVVSt4InZNCb0TL1OLIT9k37CLm-DvXIQ_KU2qMBUyQ16dlqR8KGbRE4sjT0A_kQdBoXxt5QCSQVXxK4kM9J9h5FHsUGellLwyL2DJPBpJHyRMZ8KYSr4OKdjSZKcdw-66EZB9vjqwiE-/s1600/Flight.jpg" height="240" width="320" /></a>By Monday we were packed and with the exception of needing to put in a few hours at work, we were ready to go. A three and a half hour road trip got us to San Francisco where we stayed overnight to catch our 7 am flight to Chicago. Five people and 2 double beds is not a good combination, and I drew the short straw, having to share the bed with both Lucy and Charlie...one rolls around and one sleeps like a starfish...giving me a night of more time awake than asleep...and with a 4 am wakeup call...well, suffice to say...we are exhausted! The kids loved the flight to Chicago...it is SO much easier to travel with them these days...We touched down in Chicago to 92 degree weather and high (for us) humidity. (my hair has taken on the humidity and is approaching afro status...) <br />
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We had a happy arrival to the Ronald McDonald House, here in Madison, Wisconsin. Kids were excited to see the house and jog their memories, and Jeff and I were happy to have a place for Hank to recover in, as well as be able to have our whole family together. <br />
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<tr><td class="tr-caption" style="text-align: center;">Waiting out the tornado</td></tr>
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This morning were awakened by a knock on the door. I ignored it. They knocked again. It was a RMH staff member. I opened the door to hear her say, "Hi...Tornado. Head to the basement!" Ack! I shut the door and woke the kids up with a "TORNADO! GET UP!" Poor kids jumped out of bed and staggered around like a bunch of drunks! Threw on robes, put on slippers, grabbed their tablets and Lucy grabbed her doll...and we headed to the basement. Once there, Lucy looked at me with tears in her eyes, "I forgot my puppets!" And off I went, risking life and limb for her puppets...Luckily, the tornado was south of where we are and we were able to resume our day after about a half hour.<br />
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Today, Hank had his pre-op appointment with Dr. Siebert, his surgeon. While we were there, we met up with the Diaz family from Atlanta, Georgia. Thirteen year old Kristina also has Parry Romberg Syndrome and is having surgery with Dr. Siebert on the same day as Hank. It was so fun to see them and we ended up spending the rest of the day and dinner with them. So great to have another family by our side, who totally understands what we are going through. The kids have hit it off great and I know Hank and Kristina will be great support for one another, not to mention the fact that there is another father here, who Jeff can connect with! Mom Karen and I have been texting and messaging and calling each other for quite some time and I already feel like I know her well! Feeling very blessed by all this!<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjtooiPTkwuz2NasmdoFCyBAhIyWqZFh97zoByK0ZpsTJtO2V9eYXVm0KTsAHXqePZS1njfz25dxrnBimhQyIYd74Flgb43WBxPfXShgSw8rb5V897x5mD-8FWmEJYBYAS8m4isiMQvAPky/s1600/Dr.+Siebert+and+family.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjtooiPTkwuz2NasmdoFCyBAhIyWqZFh97zoByK0ZpsTJtO2V9eYXVm0KTsAHXqePZS1njfz25dxrnBimhQyIYd74Flgb43WBxPfXShgSw8rb5V897x5mD-8FWmEJYBYAS8m4isiMQvAPky/s1600/Dr.+Siebert+and+family.jpg" height="320" width="280" /></a>Hank's appointment with Dr. Siebert was good. Dr. Siebert explained everything to Hank and Hank <br />
had a lot of questions. Hank is now at that age where he wants to know everything about his medical care. It's nice that he has a part in things now, and he asked great questions!<br />
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After our appointment we gathered at the Ronald McDonald House and the kids got acquainted. They hit if off great, judging from the cheering and loud laughter! Dinner for Jeff's Birthday and we called it a day...which brings me back to Hank's refrigerator raid. I can hear the thunderclaps outside our window and pray for a tornado-free night and early morning! Hank has been in great spirits, but I know tomorrow morning might be a little different. He will get nervous, and so will I. Praying for strength for both Hank and I...and for great results from this surgery. We will be wearing our green for Hank!!<br />
Lights out...tomorrow is a big day!<br />
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<tr><td class="tr-caption" style="text-align: center;">The kids getting acquainted!</td></tr>
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Terrihttp://www.blogger.com/profile/03013764786276300558noreply@blogger.com1tag:blogger.com,1999:blog-8956351798752751809.post-6212949139537204302014-06-10T08:08:00.000-07:002014-06-13T08:10:50.708-07:00One Week and Counting...I can't believe we have been on this journey for five and a half years... Just when I think we have it handled...things change. We are one week away from heading to Madison, Wisconsin, where Hank will have his 5th surgery. My heart breaks for this kid...having to face another operation, another hospital stay...another recovery...and just all the fear and worry that goes with it. Hank is stoic...he doesn't mention it...and neither do I. But we know it is there...looming ahead...and neither one of us is happy about it.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhvTGKIHCNY-JVhOOXal1GRw9TMxnmdO4rRbh0wCO9dcc-MOqYfQMpp4shQQPv7TzyDDN56UE6YIpj5pNWyWLxbDw8vZzLDobS1tWYNULK2M4Wl5xJXjnBrSsU6GFzRwC9bwqBQ7Ta-adBS/s1600/first+and+last.JPG" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhvTGKIHCNY-JVhOOXal1GRw9TMxnmdO4rRbh0wCO9dcc-MOqYfQMpp4shQQPv7TzyDDN56UE6YIpj5pNWyWLxbDw8vZzLDobS1tWYNULK2M4Wl5xJXjnBrSsU6GFzRwC9bwqBQ7Ta-adBS/s1600/first+and+last.JPG" height="240" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">First day of school...Last day of school...grow much?</td></tr>
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We waited 6 weeks to hear back from UCSF, for the referrals to the other doctors they wanted Hank to see. By the time they finally called us, we were planning the trip to Madison. After waiting so long, all they did was refer us to 2 different departments...cranial and plastics. Well I could have done that myself! "Is there a particular doctor we should see?" I asked. "No..." said the receptionist, "just call the numbers I gave you and they will set you up with some appointments." Hmm...so our child has a disease that affects less than 2,000 people worldwide, and you want us to see just anyone? That didn't even make sense to me...<br />
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Luckily, I had received a call from Hank's surgeon, Dr. Siebert, the week before. "Hank doesn't need that bone surgery," was the first thing I heard, "He is too young, and even then, I don't know if he will <em>ever</em> need it." I could feel the weight of the world start to lift off my shoulders. "But what about the other people who have needed bone surgery?" I asked, "Isn't Hank going to need it too? I know his cheek bone has deteriorated." Dr. Siebert explained, "Hank was better off than most, when he came to me, we caught it earlier...Yes, his bone has deteriorated, we know that...fixing the tissue is to mask it...but I don't know if he will <em>ever</em> need bone surgery...and certainly not now." I couldn't believe my ears! Just what I wanted to hear..."Bring him to Wisconsin," he said, "We need to lift the flap and remove some tissue, it's weighing down his eyelid." I took a deep breath, "Hank does not want another surgery and Jeff and I don't want to put him through anything unless it is absolutely necessary."<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgM8DijlT7np38FQBCQFc9TPQ0kTdHxZDFsD5QFXrznyPnWY19mnKaacr6RB58Ci2FMZdUzfAel8VvPrdPeZ8A93xzEBiYdaqRzhf7NnFiNbAarwlfx3gFJDMkuGfiy7LVWgtTNRG84i45v/s1600/Award+7th+grade.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgM8DijlT7np38FQBCQFc9TPQ0kTdHxZDFsD5QFXrznyPnWY19mnKaacr6RB58Ci2FMZdUzfAel8VvPrdPeZ8A93xzEBiYdaqRzhf7NnFiNbAarwlfx3gFJDMkuGfiy7LVWgtTNRG84i45v/s1600/Award+7th+grade.JPG" height="275" width="320" /></a>There was a pause...and then I heard the words that squeezed my heart..."Hank is going to be 13. These are the years that matter. The years that form who we are. Hank deserves to feel confident...to look his best. Hank deserves that chance. We owe it to him...<strong>I</strong> owe it to him... I owe it to this kid to give him the best chance I can. We need to do this for Hank." My heart sank. I knew he was right... He then went on to talk about Hank's eye and all the things that could go wrong if we don't do the surgery and the tissue continues to pull his eyelid down...won't be able to close his eye, resulting in eye ulcers, dryness, and many other issues. And so that was that. Surgery on June 19th...now how were we going to tell Hank?<br />
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The next week was crazy busy, with me working long hours and putting on three events that week. I only saw Hank for an hour before school and knew that I couldn't tell him then. And so we waited all week to tell him. It was painful...and worrisome...how would he react? We finally found our chance that weekend...I had to work on Saturday, so Sunday after Mass would have to be the time. As Jeff and I made our way up the stairs to Hank's room, my heart was heavy. I rehearsed in my head what I would say. Hank was sitting on his bed, playing a game on his laptop. He looked up when we came in and I saw the questions on his face. Must be serious...both mom and dad in his room...and wanting to talk!<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEigBMrY-ME_TiIHPu-0bafhr08hJ-DBAXmKsLRs1NCFFqgenOVk5K6FJPqS7ZR5NU_ZVXITOHwvXuNABXrdH1t2Dg3Go6ClJ5RKFJTs9Po29PUNeCxwBLpH0eJTXSvxnK6xcixvYSSHpNgZ/s1600/Hank+as+Bruce+Lee.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEigBMrY-ME_TiIHPu-0bafhr08hJ-DBAXmKsLRs1NCFFqgenOVk5K6FJPqS7ZR5NU_ZVXITOHwvXuNABXrdH1t2Dg3Go6ClJ5RKFJTs9Po29PUNeCxwBLpH0eJTXSvxnK6xcixvYSSHpNgZ/s1600/Hank+as+Bruce+Lee.JPG" height="320" width="291" /></a>Jeff sat down next to Hank and I sat on Charlie's bed across the room. We started off by telling him that he would not be having bone surgery. "Oh thank God!" he exclaimed as he looked up at the ceiling in relief. "but..."said Jeff, "you do need the tissue surgery in Wisconsin." Hank's face fell..."NO! NO NO NO!" He said in a voice laced with anger and disappointment. "We are so sorry," I said, "but we have to do this...you need it.", and went on to explain why. Hank sat silently and listened...and then the tears started to roll down his cheeks. He tried to wipe them away before we saw them, but they were too quick and there were too many. "No..." he said quietly. I felt terrible. This was awful. It was so much easier when he was little. He didn't quite understand and he didn't seem to remember the surgeries. But now...now he gets it...and he remembers...and I don't blame him...I wouldn't want it either. <br />
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I watched his face and could see the range of emotions...anger, disappointment, sorrow...and then resignation... "OK. Fine. I'll do it," as he wiped the tears away and sat up. And that was that. I knew he was angry and hurt...but he did not want to talk about it... he wanted to be alone. We left the room and went downstairs...and then it was my turn to cry...<br />
<br />
I sent Dr. Siebert a text..."We just told Hank about his surgery. He is very upset. Would you be willing to talk to him about it?" The response came back right away..."Absolutely!" He called that night. "Hi Terri, It's Dr. Siebert. Is Hank available?" (I love this man) I handed Hank the phone, "Oh Hi Dr. Siebert!" Hank exclaimed when he heard the voice on the other line. They talked for a few minutes, and I heard Hank say, "OK. See you in a few weeks." Whew...he sounded OK. Hank handed the phone back to me..."I told Hank not to be mad at mom and dad," Dr. Siebert said happily, "I told him to be mad at me...it's not mom and dad's fault, but you need to have this done. He'll be fine now." Once again Dr. Siebert leaves me speechless..."See you in a few weeks!" he said, and we hung up.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgyCrpSS4XEMJd96Jl_o3m7hwyAnaqcEmjyoLVEAMwWoeGAwmetBd70VmTK6y24RhosjjMSUlBNZfxyt7rhPxCjCcCpH92bclURzxlizsFd7yZj9GkGHnXSnJS5dj21CD0O0n_INjd5A323/s1600/the+new+8th+graders.JPG" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgyCrpSS4XEMJd96Jl_o3m7hwyAnaqcEmjyoLVEAMwWoeGAwmetBd70VmTK6y24RhosjjMSUlBNZfxyt7rhPxCjCcCpH92bclURzxlizsFd7yZj9GkGHnXSnJS5dj21CD0O0n_INjd5A323/s1600/the+new+8th+graders.JPG" height="320" width="277" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Last day of 7th grade</td></tr>
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It's been two weeks now...Hank seems OK. Summer has started, with the last day of school just a few days ago. Hank received two awards and sailed through the year with good grades. He is happy to have this week at home to just relax. Unfortunately, we will be celebrating his 13th birthday at the Ronald McDonald House, and therefore he has told me, that I we will be having his party this weekend. (What's one more thing to do before we leave?) I am trying to get him to have a slumber party...outside in our tent, but he is indignant..."You want us to sleep <em>outside</em>?" He clearly doesn't get the whole "camping vibe" that we are trying to create...<br />
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Today is the day of our fundraiser. "Pizza With a Purpose". It's our first one since moving back to our hometown. Wish I had time to really plan one and advertise. We put this together in a day...but with our kids' amazing school, and the radio station running a PSA about it, it should go well! <br />
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Little miracles have been happening this whole last week. A letter came from the State Controller's Office that said a local bank had lost funds of mine. I went to the bank and found that it was just enough to cover the plane fare to get us to Chicago and back...the radio station recording a PSA for Hank's fundraiser...unsolicited all about 12 year old Hank Gibbs and his fight against Parry Romberg Syndrome!...and last night...last night put me over the edge of stunned gratitude...<br />
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Hank is not the only one having surgery next week...13 year old Kristina, from Atlanta will also undergo surgery for her PRS. Mom Karen and I have become close friends over the years...and saw an opportunity to meet in real life and for the kids to have someone to go through the surgeries with. I had put out note on Facebook, asking if anyone had an "in" with the Chicago Cubs...we will be flying out of Chicago and would love to take the kids to a game...but tickets are pricey and our money needs to go towards the necessities... <br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjRl1DpR7iDTp2eN3uR47Ra6B7vKCUqgrT5VQWonjGrJiqSBm02Rxxj000wm08S9Kdf9NbeHTx4mQGoQ_Q2Xgta65JsAp4rJaf69m6EenfOArNVEzH8snd5V6eg5GPqUor9x98HjXH-ZWan/s1600/IMG_1360.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjRl1DpR7iDTp2eN3uR47Ra6B7vKCUqgrT5VQWonjGrJiqSBm02Rxxj000wm08S9Kdf9NbeHTx4mQGoQ_Q2Xgta65JsAp4rJaf69m6EenfOArNVEzH8snd5V6eg5GPqUor9x98HjXH-ZWan/s1600/IMG_1360.JPG" height="240" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Our surprise visit with the McQuillen Family in NYC 2009</td></tr>
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Last night I got a message from another PRS mom, Flora McQuillen, "How many tickets do you need?" she asked...I responded with a cringe..."nine. 5 for our family and 4 for Kristina's family". (nine is a lot to hope for...) I told her if we had one family covered, we could split the cost of the other tickets... The next thing I know...she sends me an email with a confirmation attached...she and her family have purchased our tickets...all of them...NINE! I couldn't believe it...Here is another family who have walked this walk that we are on. We met them in New York after Hank's first surgery. Their son Pat, was 13 at the time and had already had his first surgery. I will never forget how excited we all were, to meet in person! Pat was the first person with PRS that Hank had ever met and I was so grateful to get the chance to meet them. It was a short visit...just coffee before they caught the train home...but it is a memory that I will treasure forever. I can't thank Flora enough for her generosity. I was in tears as I let Jeff know...and still in tears when I told Karen. And then she was in tears too...<br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjIAwdFnSY4D99OcT3m7Y0OSKtt5mr9SysEwrn2v5Dl2fvX743845vb5_61fYErRUmj0e9pUkdP6o6L6IAGvriyac8lD3KK_CQ2TqNprBs-R5cNxHThiaoav5URDSQA6Q71cRcSKsGKv4Pk/s1600/Morro+Bay+May+2014.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjIAwdFnSY4D99OcT3m7Y0OSKtt5mr9SysEwrn2v5Dl2fvX743845vb5_61fYErRUmj0e9pUkdP6o6L6IAGvriyac8lD3KK_CQ2TqNprBs-R5cNxHThiaoav5URDSQA6Q71cRcSKsGKv4Pk/s1600/Morro+Bay+May+2014.JPG" /></a>I have no idea what today will bring...The fundraiser starts at 11:00 and goes all day. I will be running back and forth from work, so that we can be there at lunch and again at dinner. I have high hopes that Hank will have some friends there...we will raise some money for Hank...and raise awareness for this disease does not define who we are...but has definitely changed our priorities and opened us up to things we never imagined...good and bad. Today is all about Hank...strong and stoic Hank...facing surgery #5 with grace and courage...<br />
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* Note: I started this blog years ago, to keep our family and friends informed on Hank's illness and progress. This is a disease full of unknowns...unknown cause, unknown progression and it affects each person differently. Although we wish Hank did not have to have surgeries, the alternative is much worse and we are extremely grateful we have Dr. John Siebert in our corner. I can't imagine what Hank's life would be like if we never had the micro-vascular free flap tissue transfer. These surgeries give Hank the normal life we have prayed for and we would not change a thing!Terrihttp://www.blogger.com/profile/03013764786276300558noreply@blogger.com2tag:blogger.com,1999:blog-8956351798752751809.post-51554268008872567242014-04-25T13:54:00.001-07:002014-04-25T13:54:54.316-07:00Game ChangerHank is almost 13...in just 2 months, he will be a teenager...and he already looks like one! Hank has grown at least 5 inches in the last year...going from little boy to young man overnight! And nothing reminds me more of this, than the fact that Hank is starting to want to know and have some say about his medical care. <br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhanYUMGs0zlIetD1tDKwxPu7jHyIRb-mq9Q1TUiZsgthLdCbfYpNh1fqrmCBIri1L9ZWTt9qU0alJXiKVTvpQHenoXBICueKdsi-5O1LuwnjKTMelY3ndfEm2MnVdjW68IyS25bTQXNS72/s1600/Easters.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhanYUMGs0zlIetD1tDKwxPu7jHyIRb-mq9Q1TUiZsgthLdCbfYpNh1fqrmCBIri1L9ZWTt9qU0alJXiKVTvpQHenoXBICueKdsi-5O1LuwnjKTMelY3ndfEm2MnVdjW68IyS25bTQXNS72/s1600/Easters.jpg" height="425" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">L: Easter 2013, R: Easter 2014</td></tr>
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After Hank's last surgery in October 2012, Jeff and I told Hank that "this is it...no more surgeries unless medically necessary or if you ask for it." Here we are a year and a half later and faced with the knowledge that more surgeries are in his future. Hank is scheduled for surgery this June in Madison, with Dr. Siebert. I have known for a few months, but didn't want to tell Hank until he got through all his big projects at school. But this week, push came to shove and I had to tell him.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgnmF4qgAnMH_cqxzA-TdjauzjQvwZ3cnveKM2-1jgnyXfkEn-JhKGV9mW8RrOnFjdGClA6WuevRqwTP7eCO_SBdYWKbHtk3N9dD8nbyztBvrGp-cHQyXHminFbOQ3eQ0y6kNF54KEHEiZT/s1600/Hank+at+UCSF.JPG" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgnmF4qgAnMH_cqxzA-TdjauzjQvwZ3cnveKM2-1jgnyXfkEn-JhKGV9mW8RrOnFjdGClA6WuevRqwTP7eCO_SBdYWKbHtk3N9dD8nbyztBvrGp-cHQyXHminFbOQ3eQ0y6kNF54KEHEiZT/s1600/Hank+at+UCSF.JPG" height="240" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Waiting Room with a view!</td></tr>
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We are up in San Francisco right now...after having gone to UCSF for an appointment with an ocular plastic surgeon. Hank's eye looks like it is falling...so Dr. Siebert referred us to a doctor in SF for a consult. I don't know what I expected...but what I got...was NOT what I expected! In all honestly, I was supposed to bring Hank here a year ago! But after just having a surgery, I couldn't bear to take him to yet another doctor...so I dragged my feet until I HAD to go...but I wanted to make sure before heading to Madison for surgery, that we had all the info.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgXShwpkJMTnTplaLWiwVMnY3DqolZf9gRbb-ZilfaQeZW9fSBObEVrmpx7yGUTgMfbDI-J4USPtT8iNX6tPNINwm5wiETObUyjFRfT7YgNyydw-eRLTxJrxFIrdHL5I57F1u45vjK_j1GZ/s1600/Waiting+room+UCSF.JPG" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgXShwpkJMTnTplaLWiwVMnY3DqolZf9gRbb-ZilfaQeZW9fSBObEVrmpx7yGUTgMfbDI-J4USPtT8iNX6tPNINwm5wiETObUyjFRfT7YgNyydw-eRLTxJrxFIrdHL5I57F1u45vjK_j1GZ/s1600/Waiting+room+UCSF.JPG" height="640" width="480" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Always a smile on his face!</td></tr>
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The good news is that Hank's eyesight is pretty normal (although, he could benefit from glasses...which makes glasses-wearing-little-brother-Charlie, quite happy!)..and Hank's left eye is just a millimeter lower than his right eye...which is just where most people are. So what we are seeing is not Hank's eye "dropping" but his lower eyelid being pulled down. What is less than happy...is the theory is that his bones have been affected...and after the doctor had me place my hands on Hank's cheekbones, I know he is right. The right cheekbone is where it should be...the left is flat...the bone has deteriorated.<br />
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After examining Hank, the doctor told us, "I don't think he has Parry Romberg Syndrome." WHAT? How is that statement even possible? I pointed out that two doctors at UCSF diagnosed him with PRS over 5 years ago, as did our pediatrician and Hank's surgeon! He pointed out that Hank does not have "en coup de saber" which is the indentation of the forehead. I told him not everyone manifests that way...and then he said that PRS only affects soft tissue and not bone, and yet clearly...Hank's bone has been affected. Again, I explained that Hank had a micro-vascular free flap tissue transfer 5 years ago and then 3 revisions, so of COURSE his tissue would look good! At that point, the doctor, turned and looked at me, "You have obviously done research, and probably know more about this disease than I do..." (which reversed the opinion of him that I was quickly forming..) <br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEihhVwM7aD2g0nI8AQ8n70n3g15INltI9o-720GNmW9ewkHnymiTL6eO4l_vaXEQLKYqt1GlDXaO8C9uXFKPiXPY8GIymQRMLvC0h5-fTeIYjlYbsSZX0t8VTLl8xdwyZGYYJSao2Z29en8/s1600/Doctor.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEihhVwM7aD2g0nI8AQ8n70n3g15INltI9o-720GNmW9ewkHnymiTL6eO4l_vaXEQLKYqt1GlDXaO8C9uXFKPiXPY8GIymQRMLvC0h5-fTeIYjlYbsSZX0t8VTLl8xdwyZGYYJSao2Z29en8/s1600/Doctor.JPG" height="320" width="240" /></a></div>
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So here's the bottom line....This doctor thinks Hank needs bone surgery....either a bone graft or a surgery to move the bones forward. He wants Hank to come back and see the cranial team....the facial plastic surgeons, to have an MRI or CAT scan, depending on what those doctors think, and then to come back and see him in 2 months. But in less than two months, we are supposed to be in Madison, Wisconsin, where Hank will be undergoing surgery to raise the tissue up around his eye and debulk his cheek. ARGH!!!<br />
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"Hank is scheduled for surgery in two months!" I exclaimed, "What do we do? Go forward or wait? I don't want to put Hank through another surgery that won't work!" The doctor said that the tissue lifting is just to mask what is really happening and would turn out much better with the bone addressed first. Now here is where my heart breaks...I KNOW what this surgery is...I have been afraid of this surgery for years, and have been PRAYING that Hank would avoid it. But the fact is, our friend, Kyle, in Connecticut had to undergo this surgery when he was 17. His family flew out to UCLA for it, and I remember his mother Patty, telling me how terrible it was. Hank was just 8 at the time...and that seemed so foreign to me...but in the back of my mind, I have never forgotten her words..."Worst surgery he had ever been through...and the recovery was horrible"... I remember the photos of the aftermath, and her telling me how angry and miserable he was.... <br />
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Hank is happy....he thinks the bone surgery will be better than the tissue surgery, "I am OK with it as long as I don't swell like I do after the other surgeries..." Ahh....ignorance is bliss!<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhJzLIifKRseiT8SyrYcsFWQ09461NGBLF2pCeR491xO_6ef83LJPMlcocVxiRP0vjKl6PmDcnFbB2ELwugkIFdSVDIxrEOKpGjYq6TigJZCog8fyHYKAeK2n70g_lluVELvnD04Tw1KOPX/s1600/Scoma's.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhJzLIifKRseiT8SyrYcsFWQ09461NGBLF2pCeR491xO_6ef83LJPMlcocVxiRP0vjKl6PmDcnFbB2ELwugkIFdSVDIxrEOKpGjYq6TigJZCog8fyHYKAeK2n70g_lluVELvnD04Tw1KOPX/s1600/Scoma's.JPG" height="208" width="320" /></a>We left that appointment with Hank in good spirits and Jeff glad to have more info...but my stomach is in my feet and I feel lost. We had a plan...I liked our plan...with a doctor we know and trust. A doctor who understands the pathology of the disease. I know this new doctor is knowledgeable about his field...but this feels like it's a bit foreign to him...and I don't like it.<br />
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After a beautiful dinner at our favorite San Francisco restaurant, Scoma's...and a much needed drink or two...I once again have put this in God's hands. I can't worry about it...I know the path will unfold and we will follow it, just like we have in the past. (OK, who am I kidding....I will still worry about this 24/7)<br />
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I sat down this morning to send a note to Dr. Siebert, and to ask him to call this doctor. Halfway through the email, my cell phone rang and on the other end was the tirelessly upbeat voice of our favorite doctor, Dr. Siebert!! What a relief! We had a long conversation...he reminded me that we have known about the bone...and that we have been just doing the best we can with the tissue...(I think I have been in denial about that). He is going to call this doctor, mull it over and call me on Monday to come up with our game plan. I love that he asked what Hank thinks...which I replied, "That he never wants another surgery!" and he asked if Hank's eye hurts, or is red... I believe he is trying to determine severity of his eye...<br />
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So now we wait...to hear from Dr. Siebert...whether we go forward here at UCSF or south to UCLA, I think we have a couple of months of doctor appointments and tests. I don't know if we will end up in Madison or not...which is a killer, since we had planned to meet our friends from Atlanta in Madison, where Hank and Kristina would undergo their surgeries on the same day...giving two kids with PRS a chance to hang out...and two moms and dads a chance to connect in REAL life with people who understand EXACTLY how they feel!<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgtONg-m2-wikxlI-xqsH3MAJQ_zRLA6wCCzoBhOx3rFHBUDR-032V1DCh_OyDtZLSVhxSNmrcIWtWbb9_gHHLrBYm8RdhOJyP2oq84WnYGbxksF-pC5eHpzXDngLC8VXdOJo2pZ1_qpid5/s1600/SF+kids.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgtONg-m2-wikxlI-xqsH3MAJQ_zRLA6wCCzoBhOx3rFHBUDR-032V1DCh_OyDtZLSVhxSNmrcIWtWbb9_gHHLrBYm8RdhOJyP2oq84WnYGbxksF-pC5eHpzXDngLC8VXdOJo2pZ1_qpid5/s1600/SF+kids.JPG" height="288" width="320" /></a>Please keep Hank in your prayers...I continue to pray for a miracle and hope for a cure! In the meantime, we are heading out to have some fun in San Francisco and join some friends for tonight's Giant's game! Life continue's on...and we will continue to meet each hurdle head on...together...!<br />
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<br />Terrihttp://www.blogger.com/profile/03013764786276300558noreply@blogger.com4tag:blogger.com,1999:blog-8956351798752751809.post-26860091009083375352013-10-16T17:48:00.000-07:002014-02-21T20:59:01.086-08:00Five Years...There are a few moments in your life where everything stands still...where you feel the floor drop out from under you...where you know that life will irrevocably never be the same. Sometimes these are wonderful events...finding out you are going to be a mother or father for the first time...your wedding day...the birth of a child... I remember those good times with acute clarity...but those moments of utter sorrow resonant loudly with me. <br />
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There are a few catastrophic events that have taken place in my married life...things that brought me to my knees...and the memory of each one leaves me with a heartache I never imagined. Driving 90 miles to the hospital after my father suffered a heart attack and the phone call from my husband telling me, "I asked him to wait for you"...that exact moment that I knew that my Dad was going to die and I might not be there to say goodbye...The moment I realized in utter and complete fear, that I was miscarrying our fourth child...and the phone call from the doctor telling me that our sweet, handsome little 7 year old boy had a rare, incurable, progressive disease that would disfigure his face and cause his brain to atrophy.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjNL5-aOusAmTatSyFX3jBdGP8JeUNW8qRH8fWz13IF7W0KF90D_ExDH0GyaPR8fSmzVvDHJt9uo4Jg0nCnFVDGN-JuURn97rcEiwUgJiSIpzK9mO8E7bdwjg9UHldl2MagbXSzSr_fcWI3/s1600/October.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjNL5-aOusAmTatSyFX3jBdGP8JeUNW8qRH8fWz13IF7W0KF90D_ExDH0GyaPR8fSmzVvDHJt9uo4Jg0nCnFVDGN-JuURn97rcEiwUgJiSIpzK9mO8E7bdwjg9UHldl2MagbXSzSr_fcWI3/s1600/October.JPG" height="320" width="320" /></a>It's been five years to the day, that we got the devastating diagnosis of Parry Romberg Syndrome...and today I am taking it hard! That phone call changed our lives...and I now think of life as "Before PRS" and "After PRS". At that moment our priorities changed...the way we look at life changed...for as many people who rallied around us...just as many abandoned us... And nothing mattered to us except finding a way to help our boy!<br />
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So here it is 5 years later...and I never thought we would be where we are now...that Hank would be 12 and living life to the fullest. In these last five years, we have had 24 fundraisers...Hank has met six other people with PRS...(which is just amazing!) We have traveled to NYC four times and once to Madison, Wisconsin for treatment...Hank has endured 4 surgeries...We've reached 30,200 people through this blog and many more through Hank's web site... we have been embraced by the Elk Grove/Sacramento community and blessed in more ways we thought possible. <br />
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I have connected with multitudes of other parents of PRS kids and adults who suffer with the disease. I have learned so much and I have been able to guide others through the terror of this diagnosis. Hank has helped other kids through the surgeries and continues to cheer on those who are walking in his steps. I count quite a few of those mothers as my best friends...even though I have only met a few in "real" life! With all the bad...comes so much good!<br />
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Hank is in 7th grade now....7th grade! How is that possible? No longer little and puny...I swear I can see him growing! Not as tall as me...but in a year, I have the feeling I may be looking UP at him! I worry about Hank...I worry about his health...his happiness... Hank is resilient and strong...this last school year was probably one of the best of the past five years. To me, 6th grade was scary...to Hank...it was fun and challenging. He excelled in his classes...had fun playing in the school band, taught by a teacher he truly loves (and who loves him right back)...getting up every day...excited and ready to go. I was amazed! He even went away for the annual spiritual retreat...five days without mom or dad...I never thought we would get to a point where we would be OK with letting him out of our sight for that long...but with open hearts and trust in God, we did...and he had the best time! He came back more secure in who he is...knowing he can do things on his own...breaking away from us was great for him...and me!<br />
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Now our family is on another adventure...we've moved! Not across town...across the state! 350 miles away...back to our hometown...from a city of 180,000 to one with just 45,000 people. Very excited about being "home"...the place where all three kids were born...the place where I was born...deep roots and a beautiful place. They are in a new school...one that they love...and the school loves them right back! It is a wonderful blessing to be surrounded by loving teachers and administrators who care about the "whole" child!<br />
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Hank's journey with PRS is far from over. We realize that the surgery last October did not do what it was supposed to do...and another surgery is looming...but we take each day as the gift it is and are so thankful that right now he is enjoying good health and loving life!<br />
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After 7 years of being home with the kids, I have re-entered the workforce, something I would never have considered a few years ago...But with the kids being older...it's time. At the beginning of the year, my former employer called and asked me to move back and rejoin the company. After months of driving back and forth...lots of talking and prayer...we finally decided to make the move.<br />
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Best decision we could have made...<br />
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Terrihttp://www.blogger.com/profile/03013764786276300558noreply@blogger.com2tag:blogger.com,1999:blog-8956351798752751809.post-35563508558766959802012-11-30T02:59:00.000-08:002012-11-30T02:59:01.752-08:00I can't believe it has been 8 weeks since Hank's surgery! Halloween has passed, as well as Thanksgiving and December is just a day away! Time seems to be speeding up and my intention of writing about our last days in Madison has not happened! (but it will! We had an amazing last few days there)<br />
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Hank has resumed his normal activities and is feeling great! He still looks somewhat swollen and shows some discoloration, which should fade. We have sent photos to his surgeon for his opinion. It concerns me that he still looks a little "heavy" on one side and his eye isn't quite what I expected...but Hank's prognosis is good....which I will write all about...just as soon as I get a chance!<br />
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We are gearing up for our 4th Annual Tamale Fundraiser! Taking orders now through December 7th, with delivery Dec. 14-15. (at least that is what the restaurant is telling me) This is our last fundraiser of the year...and an important one, as we are watching the bills that insurance wouldn't cover, start rolling in! (yikes!) Check back here for a more detailed update of our time at the Ronald McDonald House...of meeting another PRS patient, of Hank's teacher's sister coming to visit and good news we got at Hank's last appointment with his surgeon! Lots of blessings for this family in Madison!Terrihttp://www.blogger.com/profile/03013764786276300558noreply@blogger.com3tag:blogger.com,1999:blog-8956351798752751809.post-91684462259586120452012-10-08T18:08:00.000-07:002012-10-10T18:13:02.801-07:00The Journey to Green Bay and the Miracles Along the WayDay three post-op and we were ready for a break! We took Saturday and made it a day of rest. It was cold and cloudy out...the perfect day to stay indoors. Hank was still feeling shy about his swollen face and not able to open his left eye, and really just wanted to stay put. Lucy and I had caught colds, so we needed a day of rest as well. Hank and brother Charlie played video games while Lucy colored. We watched movies, read books, caught up on laundry and relaxed.<br />
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On Sunday, we got up early (early for us, that is...) and went on a road trip. We couldn't let this trip just be about surgery! We find that it's easier, if we do fun things too...then Hank tends to remember the fun stuff and not the surgery itself. So we headed up to Green Bay. It was an unfortunate start of the day, as I got hit with the stomach flu that morning...but we had a plan for the day and nothing was going to stop us from going!<br />
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About a year ago, when Dr. Siebert said Hank needed another surgery and we knew it was going to be in Wisconsin instead of New York, my sister Patty sent me an email with a link. In it she wrote: "This is why you will go to Wisconsin." The link was to a site for <a href="http://www.shrineofourladyofgoodhelp.com/" target="_blank">"Our Lady of Good Help"</a> . It's a place where the Virgin Mary appeared some hundred years ago and is now a shrine...it's the site of healing and miracles...and since we want Hank cured...well...we want a <i>miracle</i>...we just had to go! It was almost a three hour drive through pastoral Wisconsin. Very serene with dairy farms, orchards, with the leaves changing colors and more. Following the signs to the town of New Franken...and down a long country road dotted with dairy farms, we found the shrine. Made up of just a few brick buildings, it didn't look like much...a church, a gift shop, a small cemetery... We got out of the car and walked around...not sure where to go first...I saw a sign that said, "crypt"... That sounded a little ominous...and then an arrow that read, "shrine." <br />
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We headed down the stairs into a dark room, and there in front of us was a lovely scene. A beautiful statue of Mary, <i>Our Lady of Good Help</i>, brightly lit and surrounded by bouquets of flowers, flanked by statues of kneeling angels, stood in the middle of the room. The only other light came from the numerous candles around the room. I was immediately awestruck and in tears as I knelt in the silence of the room, asking for the miracle we so desperately want. Hank went up and knelt in front of the statue, soon joined by Charlie and Lucy...all three with hands clasped and heads bowed in prayer. For me it was that last-hope kind of feeling...the one where you just want to prostrate yourself on the floor and beg...BEG for your child to be healed!<br />
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Hank was quiet and serene...just taking it all in. We made our way to the gift shop, to grab a few remembrances. As I paid for our purchase, I was talking with the nice ladies who run the gift shop, telling them that we came all the way from California. They inquired about Hank's surgery and I filled them in. One lady disappeared into the back room and came back carrying two items. "These are relics," she told me, "one from St. Theresa the Little Flower and one from St. Maria Goretti." Now this might not be amazing to anyone else...but to me, it was astonishing for two reasons...one is that St. Theresa is my patron saint...and to come by a relic of hers is quite unusual...but two...our church was started a few years ago and just this August, we completed and moved in to our new church...called...St. Maria Goretti's! So for me...this seemed so significant! The woman explained that the relics had belonged to a woman who passed away and her family left the relics with the shrine. I had Hank hold the relics and he blessed himself with them. (extra prayers!) <br />
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As we left the shrine, we saw a dog sitting in the parking lot. "Here boy!" Hank called as soon as he saw it. The dog turned and saw Hank...stood up...wagged it's tail and made a beeline for Hank. We have a border collie at home named Maverick...and the kids are really missing him. As the dog came closer, I realized that this too was a border collie! The dog came right up to Hank, rolled over onto his back and waited for Hank to rub his belly! All three kids converged on the dog, petting him and scratching his belly. When he had enough, the dog rolled over and only had eyes for Hank. All he wanted to do was reach Hank's face and smother him with dog kisses. Hank's face lit up with such sheer happiness...an amazing sight!<br />
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We finally gathered up the kids and headed for our next stop...Green Bay...home of the Green Bay Packers! You can't go to Wisconsin and NOT go to Lambeau Field! It's the Holy Grail of Football! I expected a big city like San Francisco or something...but it's not...no skyscrapers...and the stadium is truly in a neighborhood! The parking lot looked deserted...the Pack had an away game that day...but we went ahead and climbed the steps to the stadium anyway. From a religious shrine to a sports shrine...that's how we felt. So excited to be there! Lucy and I fell behind as we hit the ladies room...Jeff and the boys were at the info desk, talking to the woman at the counter. The next thing I knew we were following her from the atrium to the actual stadium! Apparently, she told Jeff it was closed...but then taking a look at Hank's sad sutured face and hearing we were from California...she called security and got clearance to take us out. (A football miracle? I think so!) It was AWESOME! Jeff looked the happiest of all as he said, "Take a picture of me!" with arms outstretched and Lambeau Field in the background.<br />
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We thanked our tour guide profusely, sad that we missed the real tour where they take you through the tunnel...but so excited that we actually made it there and got to see the stadium. As we drove the three hours back to Madison...I took a turn for the worse. I had made it through the day and now the stomach flu was taking over. But I was so grateful for the day of mini miracles...smiles on everyone's faces...Hank getting some solitude in prayer and the excitement that only a great sports' institution can bring! We still had to face getting stitches out the next day ...and Hank was still swollen and not feeling very well...but for one day, it was nice to get out and enjoy the Wisconsin countryside!<br />
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The next morning, Hank exclaimed, "Mom! I can open my eye!" Finally! After five days...he could open his eye. What a relief! "I prayed that I would be able to open my eye and see," he told me, "at breakfast I thanked Our Lady for answering my prayer." I can't help but think all our prayers were answered...there are no coincidences...and all the little things that happened at the shrine tell me that our prayers were being heard. Maybe they aren't answered right away...but they are answered!<br />
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Since I am talking about shrines and statues..etc. I do want to add something...We do not worship statues and we do not pray to anyone other than God. A statue is just like a photo of someone...a remembrance ...and if I ask you to pray for Hank...why wouldn't I ask those who are already in heaven to do the same? Jesus loved his mother and would do anything for her...so when I ask Mary to cure Hank...I am asking her to intercede on our behalf, to her Son...that is all. Our journey over the last few years with Hank and his PRS has had the highest of highs and lowest of lows...but through it all we know that God has shown us the path...Terrihttp://www.blogger.com/profile/03013764786276300558noreply@blogger.com4tag:blogger.com,1999:blog-8956351798752751809.post-38440910922770635272012-10-06T11:45:00.000-07:002012-10-06T11:46:50.578-07:002 Days Post-Op<div class="separator" style="clear: both; text-align: center;">
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Everyone has a blanket and we are cozied up together on the big sectional in the family room, watching Looney Tunes. Such a fun and "normal" thing to do...the perfect scene you would expect for a Friday Family Night at home! But wait...we aren't at home...we are still in Madison, Wisconsin...thank goodness we are here, at the Ronald McDonald House! Really gives us a chance for some kind of normalcy when things aren't normal at all! Tonight, I saw the first hint of a smile on Hank's face, as he sat next to his Dad, watching Bugs Bunny. Of course he can't give a full smile since half of his face can't move yet...and he is still terribly swollen and unhappy...but right now...he is just being a kid and hopefully getting a little respite from the trauma of the last few days.<br />
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This morning, we took the short commute to the "Transformations" clinic in nearby Middleton. We met with Dr. Siebert's P.A. (physician's assistant) Luann, for the removal of the hated sutures on Hank's eye. We have all been dying for him to get them removed...they make it so hard to put drops in the eye...and with the swelling, they were pressing into Hank's upper eyelid. Not comfortable at all! Luann is so nice...and with three kids of her own...I think she had some insight into how Hank's been feeling. Since there was tape on Hank's forehead, she applied a solution to loosen it...while we were waiting I asked for a favor.. "I was just wondering if you could help Lucy while we are here?" I asked. "What do you need?" she replied. "Well...Lucy had her ears pierced 6 weeks ago...and she would really like to wear different earrings now...but she won't let me remove them. Since you are a professional..." Luann smiled and asked Hank and Lucy to switch spots. Very carefully Luann removed the earrings and replaced them with the new ones. Quick and easy! Which is great because when I tried to do it last week, there was a lot of screaming and crying! </div>
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Hank's turn was next and Luann made quick work of the removal of the tape and then the sutures. She was done before Hank had time to complain...and when she told him she was done, I saw the hint of a smile appear! I'll admit that it was a smile of relief and not happiness...but we will take what we can get! With our next appointment set for Monday, and Luann's lunch suggestion of "Quaker Steak & Lube", we headed out. Hank did not want to go anywhere. "Let's go back to the Ronald McDonald House," he said. "Aw...c'mon Hank...let's go get some lunch!" said his Dad. "No...I just want to go back!" Hank was upset by the mere prospect of being out in public. But after telling him how they are used to seeing people who have had facial surgery in that area and he could wear his hood...he finally relented.<br />
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Hank kept his head ducked and his hood on as we entered the restaurant. He burrowed his head into my side and I threw my arm around his shoulders and tucked him in close to block him from the other patrons. When we got to the table, I notice he chose the seat against the wall, so that anyone walking would by would just see his "good" side. Clearly, he thought this out. I could tell he was uncomfortable at first...not wanting to look at the waiter. But as we ate lunch, Jeff told the kids stories of his daredevil youth and had them all cracking up. I could see Hank's guard was down and he forgot where he was for a few moments and giggled and guffawed with the rest of us. As it turns out, it was short-lived...the moment we stood to leave, the hood was up and he retreated back into his cave. He didn't want to play pinball or any of the video games...he just wanted to GO! (for him to pass up a video game...unheard of) I see that this will take some time.<br />
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Back at the Ronald McDonald House, we cleaned Hank's eye up and he headed down to check out some video games with Charlie. Jeff affixed an ice pack to his cheek, so he could play and ice at the same time...and he seemed at ease...comfortable in this cocoon of healing that the RMH provides!<br />
I left to do a little shopping...it's COLD here and guess who is wearing flip flops and forgot her jacket? Yep...I made sure everyone else was packed up and then forgot some essentials for myself. I mean, really....who forgets a coat when they are going to Wisconsin in the fall? Uh...that would be me!<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhRn3PfgI1yjq5M2V1sJPRQEn35k4E3ExyEp3B5CZRdPQP_pvFNYjtbFMl60MZN0AKNJC2aulD3N6j7dUZL5b03cLph6PoVZ-OWWTYoI7o8dn086rMZIn6XAFlvLITSqaVZ8q6s2iKn0Km1/s1600/P1011426.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhRn3PfgI1yjq5M2V1sJPRQEn35k4E3ExyEp3B5CZRdPQP_pvFNYjtbFMl60MZN0AKNJC2aulD3N6j7dUZL5b03cLph6PoVZ-OWWTYoI7o8dn086rMZIn6XAFlvLITSqaVZ8q6s2iKn0Km1/s320/P1011426.JPG" width="240" /></a>I fired up the rental minivan and headed over to Costco in nearby Middleton. (yep...driving a minivan and can't believe I love it!) So I finally ended up at Target...which has it's own parking garage and escalators to get to the front of the store. I love Target...so I was in heaven! While I was shopping, Jeff and Lucy were watching the baseball game and the boys continued with video games. At dinnertime, they made their way to the dining area and Hank actually sat at the table and ate dinner. Maybe realizing everyone is here because of a medical issue? I don't know...just glad he was a little more comfortable.<br />
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Armed with winter hats and gloves for our group, and a jacket for each kid and myself...apparently everyone grew since last winter...I made my way back and ate dinner while everyone else played. Eventually, the kids picked movies, which brings to where I started this whole thing...chilling in the family room of the Ronald McDonald House! I am putting this to bed and will add the photos in the morning...so exhausted as I am coming down with a cold. Sore throat, runny nose...figures!<br />
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It's Saturday morning...it's already noon... and our little band of warriors is falling one by one. Lucy had a hard night ...woke up at 2 am with a sore throat. Jeff medicated her and she ended up sleeping in the bed with me (put the two sickies together?) and Jeff took the roll-away bed...which can't be that comfortable. Hank did a lot of talking in his sleep. At 4 am, Charlie was up, changing his clothes...uh oh...his bed was no longer suitable to sleep in and I told him to get in my bed and I would sleep on the floor. "No mom! I will sleep on the floor! I don't mind!" Charlie whispered. I spread his blanket on the floor as he grabbed his pillow. I put another blanket over him and laid down next to him as we curled up against each other. He is just so sweet! After he fell asleep, I went back to bed, only to find that Lucy had cocooned herself in the blankets and decided to sleep lengthwise across the bed! I skooched in next to her...on the very edge of the bed...oh sure...I could have rearranged her and disentangled the bed clothes...but really....I would rather balance on the edge of the bed with no blankets than risk waking her! (that is how desperate for sleep I was!)<br />
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We were woken by what sounded like a car chase outside our window. Sirens of different vehicles...sounded like about 20 of them! No idea what was going on...just knew it woke us up! So here we are....I'm still in my pajamas, laying in bed. Lucy has gone back to sleep...Jeff and Charlie are doing laundry, Hank has enjoyed his first shower since surgery...and now both boys are heading down to the family room to sit and play video games. I think this family needs to recharge it's batteries today...the trauma of everything has caught up with us. Tomorrow, we will bundle up against the cold...but for today, we will circle the wagons around Hank and stay put! Hope we get to see that elusive smile from Hank today...<br />
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<tr><td class="tr-caption" style="text-align: center;">Before stitches removal...</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">With Luann after stitches removal!<br />
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<tr><td class="tr-caption" style="text-align: center;">The elusive smile...!</td></tr>
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Terrihttp://www.blogger.com/profile/03013764786276300558noreply@blogger.com0tag:blogger.com,1999:blog-8956351798752751809.post-56523051106619579772012-10-04T23:30:00.000-07:002012-10-05T08:12:27.159-07:00First Day After Surgery...<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi6qknZAMWAtSwpV56oJdAHJTg5tzkGuRvYBCSGq6NuMVcT4JZz5OO2CYgoP8GsaeAefhA9STF19T3y4S75nPaEGcvBSxCrpRJ8Y9ZqVWq7Ul-MGSEuyGKnDT4qGeHxNSMG0UwI9ANOSzCW/s1600/P1011383.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi6qknZAMWAtSwpV56oJdAHJTg5tzkGuRvYBCSGq6NuMVcT4JZz5OO2CYgoP8GsaeAefhA9STF19T3y4S75nPaEGcvBSxCrpRJ8Y9ZqVWq7Ul-MGSEuyGKnDT4qGeHxNSMG0UwI9ANOSzCW/s320/P1011383.JPG" width="320" /></a><br />
It's the end of the first day after Hank's surgery...and my mind is a jumble of thoughts. So many emotions today..and a profound loss of sleep for both Hank and I. Last night was tough...I couldn't sleep...I didn't <i> want </i>to...I just wanted to watch over Hank. But eventually, I laid down and slept here and there throughout the night. Of course everyone knows you don't get any sleep in the hospital...and since Hank's IV was pumping him full of liquid half the night, he was up every hour for a trip to the bathroom. God love his nurse, Karen, who turned down the flow on the IV and he was able to get a couple of hours of sleep!<br />
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Hank watched movie, after movie, throughout the night...falling asleep about a quarter of the way through and then waking up at the end, asking for another movie. He had to practically sit up and keep an ice pack on his face...not the most conducive situation for sleep...Every few hours, nurse Karen came in to check vitals and to put in the eye drops. We had kept ice on Hank's face for most of the night, to keep the swelling down, but even so, his eye was so swollen..it had swollen shut. The sutures, go from his lower eyelid, up over his upper eyelid and are taped to his forehead. The are pulled tight, so that the lower eyelid will stay in place...but with the eye swelling, it presses on the sutures and really hurts! Add into this fact that now we had to try to pry the eye open and put drops in. Nurse Karen reclined the bed a bit and told Hank she was going to put eye drops in. She tried to pull the eyelid open...no budging...Hank cried out in agony...His pain level shot up and she quickly backed off. After that, he had some pain medicine and slept until the 7:00 am wake up call from the attending and plastic surgery residents.<br />
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They turned on the light and charged in. I had just fallen asleep when they arrived...so I am sure I was quite a lovely sight... The attending explained what Hank's surgery consisted of and then announced she would put in the drops. I was worried because I knew that she would not be gentle. I was right. She pried that eye open and got those drops in and Hank's body went rigid with the shock of the pain. Another doctor rushed up and told Hank to squeeze his hand...which I know he did! Hank was hurting after that...but just turned his head on his pillow and told us he wanted to go back to sleep. <br />
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I told the Doctor, "I can't do that! I can't get those drops in there like that." She told me not to worry because the sutures would be coming out tomorrow and then it would be easier to get the drops in. As the flock of interns made their way out the door, I turned to the nurses, "Omigosh! He's not a CAT!!" It reminded me of giving meds to a cat! You know...grab it by the back of the neck, wrestle it to the ground, wrench open the jaws and jam the medicine down it's throat...<br />
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Hank slept for a couple of hours after that...as did I...until the pharmacist came in and woke me up...It dawned on me that it's not Club Med and I should probably get the heck out of bed and be ready for this kind of thing! Hank woke up still looking swollen and miserable. Totally normal, I know...but still startling. The daytime nurse, Emily, came in and talked about the fact that they would be discharging Hank that day. Although I knew this...it scared the heck out of me. I can't get those drops in his eyes...what am I going to do? But I knew that for Hank's mental health, it was the best thing possible! I got most of the paperwork, after care, etc, before Jeff and the younger kids arrived. By then, we were almost ready to go. Hank had a milkshake, we got all the prescriptions filled, called for the shuttle and were given a wheelchair to use. Right before noon, we got Hank dressed, gathered our stuff, said goodbye to the wonderful staff members and wheeled Hank through the hospital. We waited in the lobby for the shuttle to take us back to the Ronald McDonald House. "Can we keep this wheelchair?" Hank asked. "What?" I said, "Why would you want a wheelchair?" "So when my legs get tired, I can just sit down," he explained. Oh well...of course...that makes sense!<br />
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Back at the Ronald McDonald House, Jeff took the kids down to the movie room and had them watching movies while I got in a quick nap. We continued to ice Hank's face throughout the day and Jeff was able to get the eye drops in. (thank you Jeff!) Hank was hungry, so Jeff brought in burgers from McDonald's. (Because is you are staying at the Ronald McDonald House, you should have McDonald's at least once!)<br />
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Everything has gone smoothly this evening...almost. Hank did not like the other people staring at him, and ended up cutting his dinnertime short and escaping back to the movie room...without really eating! Hank has been quiet all night...maybe even pensive. I'm not sure if it's pain or if he's depressed. (I would think it's a bit of both!)<br />
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I know this surgery has affected all of us. Charlie has given Hank his most treasured stuffed animal to sleep with, in the hospital and here at the RMH. Jeff said that Lucy laid in her bed last night crying over Hank, finally moving to the bigger bed with Jeff, where she slept with Hank's robe clutched in her arms... Jeff looks a bit shell-shocked as he tries to get work done, keep the kids happy and Hank comfortable. We knew that it would be like this...but it has been two years and we are a bit rusty!<br />
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Tonight in the room, he walked over and hugged me and collapsed into a pile of tears. "Oh no! What's wrong" I asked. No reply ....just tears. "Did you look in the mirror?" I asked. More tears and some nodding.<br />
Brutal! What do you say to that? "This is the worst of it!" I told him. I explained that the swelling is worse in the first few days and he would be looking better...more tears. "You won't go back to school looking like this!" I reminded him...that seemed to make a little bit of a difference, but not much. He was inconsolable...I hate the helpless feeling of not being able to make it all better...right then and now! Poor kid...his tears just break my heart.<br />
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He finally settled down and went to bed...where he is peacefully sleeping...for now. Tomorrow the eye sutures will come out and hopefully that will make a difference. Nurse Emily gave us lots of ideas of things to do with the kids while Hank is recovering....and even printed out the information. We now have a car rental so we can make it to the 7:30 am doctor's appointment 15 minutes away...too early for the RMH shuttle. (only to have the appt changed to 11:30...thereby not needing a car...which we already have) So now we can get out a bit and see this beautiful area. Hopefully a change of scenery...even if it's just across town, will do Hank some good.<br />
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It's times like these...when Hank is distraught and we are bone weary...I wonder if it is all worth it...but then I look at all Hank has done and how "normal" his life is...what his life would be like if we <i>hadn't</i> done anything...and I know there hasn't been any other choice...Terrihttp://www.blogger.com/profile/03013764786276300558noreply@blogger.com4tag:blogger.com,1999:blog-8956351798752751809.post-76111296021070656032012-10-03T22:15:00.003-07:002012-10-03T23:21:08.596-07:004th Surgery DaySurgery is over and we are settled in Hank's hospital room. It's been such an emotional day, I don't even know where to start. The day started out great. The kids slept in, despite the fact that construction is going on across the street...heavy duty...with trees being ripped out, trucks beeping as they back up and lots of thumping and banging. Hank spent the morning playing video games at the <i>Ronald McDonald House, </i>as did Lucy and Charlie. By 11:30 am, we were out the door and walking to <i>The American Family Children's Hospital</i>. We checked in on the third floor and were taken to a private pre-op room. For the first time, the whole family was allowed in the room, and the kids all played DS games while we waited.<br />
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A bubbly nurse named, Christine, was the first face we saw. She went through the routine questions with Hank..."why are you here?", "what is your name?"..."when is your birthday?" Hank answered all the questions, she took his vitals and visited for a moment. Next came the anesthesiologist who was so young, I would swear I have shirts older than her! She was very knowledgeable and personable and we knew she would keep a sharp eye on Hank.</div>
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Finally, the man of the hour, Dr. John Siebert arrived! He swept in with a big smile and high fives and hugs for everyone. We haven't seen him in two years and were so excited to just be in his presence! (he's like a rock star to us!) After the hello's, he got right to work talking to Hank and asking how he was doing. He asked Hank if there was anything about his face that bothered him. They discussed that Hank's face is much fuller on the affected side (because of the tissue transfer) and how Dr. Siebert would fix it. Dr. Siebert and his surgical assistant, Luanne then studied Hanks face, and conferred on what they would do in the operating room. He took a few minutes to explain to us that he would be probably be going through Hank's mouth...his cheek...so that he could lift the tissue up around his eye. He also talked about pulling up the lower lid and closing the outer edge. And with some quick photos of Hank and an initial with a Sharpee to Hank's forehead...Dr. Siebert was off with a "I'll see you in surgery!" Things moved fast after that! Before I knew it, they were giving me a gown to throw over my clothes and a cap for my hair. Charlie and Lucy gave Hank a hug and said goodbye, as did Jeff, and we were off to surgery. Doctors and nurses pushing his bed with me trying to keep up at Hank's side...rushing down the halls, through double doors and into the operating room! </div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEinh9vQuKk-DVzmTVx3SLK18KCDpLnxduf9VjbJ0F1fCxwOKvcEPL_XbC3e2__eDUlMnqZi0HDdX1kgEZahnp04r9hJP5ttnSge7FFWXSwhuBvSR08qvnfmu3_JerqVuZZx0ImM4TUmAGXh/s1600/2012-10-03_13-27-09_524.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="180" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEinh9vQuKk-DVzmTVx3SLK18KCDpLnxduf9VjbJ0F1fCxwOKvcEPL_XbC3e2__eDUlMnqZi0HDdX1kgEZahnp04r9hJP5ttnSge7FFWXSwhuBvSR08qvnfmu3_JerqVuZZx0ImM4TUmAGXh/s320/2012-10-03_13-27-09_524.jpg" width="320" /></a>Hank was brave and stoic through it all. But as they put him on the operating table, his demeanor started to change and I could see the apprehension on his face. I happen to think the operating room is scary. It's cold...everyone's hair and face is covered...all you see is eyes looking down at you. And then there is huge lights that look like flying saucers hanging over you...it IS scary! And I knew that is exactly what Hank was thinking as the tears silently slipped under his eyelids and down the sides of his face. He reached up and hugged me tightly. "I love you, Hank," I whispered, "you are going to do great!" "I love you too, Mom," he said and gripped me tighter. It's times like these that I feel the weight of all that Hank has been through...and my heart constricts with sorrow for this child. We released each other and I held his hand as the anesthesiologist put the mask over Hank's face and started to tell him jokes. But after the third joke and he wasn't out...I started to get the first tinge of worry...and then slowly his grasp relaxed, and his eyes fluttered and closed...and he was out.<br />
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"Give him a kiss mom!" someone in the room said. I leaned forward and kissed Hank on the temple, told him I loved him and got up to leave. Dr. Siebert's eyes twinkled as he gave me a thumbs up. "Do good!" I told him and moved towards the door, with Tina the Childlife coordinator by my side. As we stepped through the door, I stopped...turned and looked...wanting to remember the scene, exactly like it was. Hank on the narrow operating table, the anesthesiologist at his head...nurses on all sides...everyone bustling around...but waiting for me to leave so they could get to work. And as the door shut, my heart leaped into my throat and I sobbed...leaving my brave boy behind...knowing he was in great hands...but seeing him struggle to keep that brave face all the way through...all the emotions...just wouldn't stay in. Tina grabbed some tissues for me and with her arm around my shoulders, we made our way back to the waiting room.</div>
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I joined Jeff and the little ones in the kids' playroom and for the next few hours we colored with the kids, grabbed a bite to eat, went outside and then sat and waited. The nurse had given us a pager and after the 45 minutes, we got our first text message, "Procedure has started. Hank is doing well at this time." The second message came an hour later..."Still working. Hank is doing well at this time." Pretty cryptic...but good!</div>
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Eventually, Jeff took Charlie downstairs and outside for some fresh air as Lucy and I waited in the playroom for the next update. And then...there he was! Dr. Siebert and Luanne were walking into the playroom. "Where is everyone?" he asked with a big grin on his face. I called Jeff's cell phone, but there was no answer...I knew if he saw I had called he would make his way back. Dr. Siebert started to explain the surgery to me, as Jeff and Charlie walked in.</div>
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He explained how he went in through the mouth...inner cheek and released the tissue so that he could bring it up around Hank's eye. He also lifted up the lower eyelid and then put in sutures from the lower eyelid, over the upper lid and taped the suture to his forehead. There is no way that eye is dropping now! He said everything went beautifully and he was very pleased. A nurse popped her head in and said, "He's in recovery! He's awake...and he's upset!" We all jumped up as Dr. Siebert said, "Let's go see him!" Lucy and Charlie had to stay behind in the playroom...as siblings aren't allowed in the recovery room. I gave them a kiss and charged out the door behind the group ahead of me.</div>
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We found Hank in the recovery area, curled up on his side in the fetal position, and quietly crying. UGH! What is this? Jeff immediately went to Hank's side and stroking his forehead told him, "I'm here, Hank. You did so good!" Hank was crying out that his throat hurt..."Water! I need ice cold water!" he kept saying. And then crying more that his throat hurt so bad. The nurse gave him a cup of ice water with a straw...but nothing was helping. Jeff gave him ice chips, and still Hank cried. He had been given a dose of pain meds and we suggested they try to up it. They gave him another dose and still Hank was in pain. I had to leave, to check on Charlie and Lucy...but before I went, I said, "I think you should just knock him out!" And I think that is what they did...because when I came back 20 minutes later, he was pretty much out and they were getting ready to move him to his room. I took over the forehead stroking as Jeff left to round up the kids and meet us at the elevators. </div>
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The nurses pushed Hank's bed down the hallways towards the elevator where Jeff and the kids were waiting. I was confused...the rooms are just around the corner from the recovery room...where were we going? We got on the elevator and I don't even know if we went up or down...but when the doors opened, we started a long trek...we took another elevator continued to wind our way somewhere...but where? We ended up in the main (adult) hospital...on the pediatrics floor. Wait! What is this? As they wheeled Hank's bed into his room, I felt a sense of panic as I noticed the toilet in the corner and the view of the rooftop. This isn't the nice new wing that we took a tour of? Where are the views with the trees? Where was the private bathroom? Omigosh! I bet they don't have a Playstation like they promised Hank yesterday!! Nooooo! We must move him! But it certainly wasn't the nice nurse's fault and I didn't want to offend anyone! So I discreetly inquired as to why we weren't where I thought we would be. "This is for the non-respiratory pediatric patients that are probably only here for one night," explained the nurse. "Well, I guess that is good," I thought to myself wondering where the bathroom was for the rest of us who would like a door to the bathroom! Especially since I was the one staying with Hank! I did find the bathroom down the hall...a little bit of a hike, but I could handle it! </div>
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Hank slept for awhile and Charlie and Lucy quietly colored pictures. At one point I looked up and saw Lucy and Charlie standing next to Hank's bed, looking forlornly at him. "Poor Hank," they said. And I realized that they had no real recollection of the previous surgeries...and that for them, it was all new...and startling! Lucy couldn't seem to stay away from Hank's bedside. She held his hand and looked at him with such sorrow...and then turned to me with tears in her eyes. "My poor brother!" she cried...running into my arms. She cried on my shoulder for awhile and then looked up at me. "I feel so bad!" I gave her a hug and told her that he would be OK. One of the reasons I brought Lucy and Charlie with us, was that we wanted them to learn true compassion...I guess we can consider this accomplished!</div>
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When Hank woke up, he was in a much better mood...watched a movie and played his DS with Charlie, while Lucy colored pictures for Hank. He had a milkshake and seemed to be in pretty good spirits with no pain. By 9:30 pm, Jeff and the kids were ready to go. As I was talking to the nurse, Jeff came out with wide eyes, "Hank's eye is very swollen and looks like it dropped!" he said. "Call Dr. Siebert!" I told the nurse and she placed a call. At the same time, I took a photo of Hank and emailed it to Dr. Siebert. He quickly responded with a "That eye isn't going anywhere! Just keep ice on it all night. It is swelling....which is normal." Phew... Jeff and the kids left and soon after, the resident who was in surgery with Dr. Siebert and Hank, stopped by. She took a quick look and said, "Don't worry..he looks fine. Just ice it. That eye isn't going anywhere. It can't!" OK...I felt better. She said she would see us at 6:00 am and off she went. I have to say, that in spite of the less-than-brand-new surroundings, the care has been outstanding! The nurses are such kind, amazing angels and we're so grateful they are here!<br />
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He has slept here and there...but not more than little cat naps. I took the ice off to give him a break. I don't think I will sleep. It's 12:45am now...and I don't feel tired. I just want to sit and watch over him...to make sure that if he wakes up, he knows I am right there. He has been through so much...not only today...not only three previous surgeries...but all of it...looking different...feeling different...being a champion for others...it's a lot for an 11 year old to take in. He's strong...and he's stoic...but he is still just a kid...he shouldn't have to go through this...but as long as he does...he will know that his Mom and Dad are right by his side...watching out for him...no matter what!</div>
Terrihttp://www.blogger.com/profile/03013764786276300558noreply@blogger.com19tag:blogger.com,1999:blog-8956351798752751809.post-15185979977645364282012-10-02T23:09:00.000-07:002012-10-03T22:16:16.366-07:00Night Before Surgery #4...It's the night before surgery and we are here in Madison, Wisconsin. The flights were uneventful...all three kids were kept busy with games, TV and books...and although I wish I could have slept on the planes, I met a very nice and interesting woman named Bridget, who gave me insight into starting our own non-profit! Some things are just meant to be...!<br />
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<tr><td class="tr-caption" style="text-align: center;">Photo from the Ronald McDonald House in Madison, WI. </td></tr>
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We were quite happy upon our arrival in Madison to see the <i>Ronald McDonald House </i>shuttle in front of the airport waiting for us! We weren't sure if they would have room for us there and were so thankful to see that van! It was very easy to see the van...there were no cars or taxi's lined up to take the multitudes into town...no...this is not New York! What a big change for us!<br />
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We feel very fortunate to be at the Ronald McDonald House. Eighteen bedrooms and they are all full...we were lucky to get in! This place is amazing! A game room with an X-Box, a Play Station and a Wii...A movie room, a TV room, a toddler toy room, an art room, plus a huge kitchen and nice sized dining area. You would think with all the people here, that we would be under each other's feet...but so far that hasn't happened. Maybe because there is a big group of Amish people here...they don't watch TV or play video games...so no competition for space there...<br />
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We took a tour of the hospital today. The <i>American Family Children's Hospital </i>is beautiful! Brand new and top of the line. The lobby looks like a little town...complete with a movie theater and lighthouse..which is really a play room. We made our way to the 3rd floor, where Hank will be having surgery. Tina, from Childlife Services met with us and showed us around. We saw the check-in rooms, where Hank will be while waiting for surgery. She showed the kids photos of the operating rooms since obviously we can't go in them...and the waiting area for families. Since it is so geared for children, there is a supervised place that Lucy and Charlie can be, if Jeff and I both want to be there in recovery. (no siblings allowed) We can all be with Hank prior to surgery, which is different from our past experiences...which I think will be good for Hank...keep his mind off things.<br />
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We also saw where the recovery room, ICU and regular rooms are. Tina told us all about what happens after surgery. She said, "after you come out of the recovery room, we will bring you down here and check you into your room." "MY ROOM?" Hank asked, startled and with tears in his eyes, "What room?" Hoo boy...I looked at Tina, "Oh...we failed to tell Hank that he would be staying overnight..." His last two surgeries were outpatient, so this was news to him! "Oh..you will love it!" Tina exclaimed, "We bring you video games and movies and you can order food off a menu! You will <i>want</i> to stay!" Hank was hugging me, with his face buried in my side...he looked up, "Video games?"...a smile started to appear, "Movies?"...it was a grin..."OK...maybe I could stay..." We went and looked at an empty room...nice and cheery with a couch for mom or dad to spend the night. (hope it's me...I want to get a look at that menu!)<br />
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After seeing the kids playroom, we headed out to get some lunch and then to the Ronald McDonald House for some playtime. Charlie and Hank entertained themselves with video games while Lucy played on the play structure outside. There is just so much to do here...way better than home! Jeff was able to get some work done and so was I. Very nice!<br />
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Tomorrow's surgery is at 1:00 pm central time. We fed Hank again at 11:00 pm, since he isn't allowed to have food after midnight...it will make for a long day tomorrow...poor kid! The surgery is supposed to be about two and a half hours. We are not yet sure exactly what will be done during surgery, since we have not seen Dr. Siebert yet! I don't think he really knows until he physically sees someone. We let the kids stay up late, in hopes that they will sleep in and Hank won't have to go that long without food...we'll see if this plan works...<br />
I will write more tomorrow...prayers appreciated!Terrihttp://www.blogger.com/profile/03013764786276300558noreply@blogger.com4tag:blogger.com,1999:blog-8956351798752751809.post-40852522135095704372012-10-01T02:50:00.001-07:002012-10-01T02:50:48.677-07:00Heading to Madison!Well, here it is...the early hours of the morning of October 1, 2012. In just a few hours, we will be getting the kids up for the drive to the airport. I know I should be in bed...but I am to anxious to even try. Maybe a 30 minute cat nap...<br />
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<tr><td class="tr-caption" style="text-align: center;">Fr. Terry blessing Hank.</td></tr>
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This is a new adventure for us...and we are all a little excited...and a lot nervous! Hank will be at the American Children's Hospital in Madison, Wisconsin this time. His surgery is scheduled for Wednesday, October 3rd...and as the date draws closer, the more emotional I become. It's funny...I know Hank has Parry Romberg Syndrome...and it's on my mind every single day...not the<i> first </i>thing on my mind anymore...but still...it's there...always. But for the most part, my focus is on raising awareness, talking to other families with PRS and fundraising for Hank's trust in anticipation for surgery. And we have been so busy with the golf tournament fundraiser. But now that is done and we had to quickly pack and get ready to go...now the realization is hitting me...Hank's having surgery! I knew that...I really did...but knowing what's ahead just breaks my heart for that kid. And then there's Hank...stoic and strong on the outside...but I know he is nervous on the inside. I see him sitting pensively...and I know he is thinking about it. He doesn't say much...but I know.<br />
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Just the other day, Hank asked me about his condition. It was the first conversation we've really had about it. Hank was just seven when he was diagnosed and we didn't tell him much. Over the years, we talk about it here and there...but now at age eleven and in the 6th grade...he understands so much more! He was sitting at the kitchen table, doing homework as I cooked dinner. (I use the word "cooked" loosely...) Turning around to look at me he asked, "Hey Mom. Do I still have Parry Romberg?" Ugh! Caught me off guard. What do I say? I looked at him, "I don't know. I don't think so...but I don't know for sure," I answered. "So how did I get it?" he asked, "did I catch it?" I ponder the question and think perhaps a classmate asked Hank the same thing. "You didn't catch it," I tell him, "we don't know how you got it...maybe from an injury, maybe the vaccinations triggered it...something triggered it in your body...and no one knows what...yet." He looked sad...It IS sad..."so...how do I get rid of it?" Now there is a question that I would really like answered!! I explained that there is no known cause and no known cure...and the micro surgery that he has had is our best option to stop the progression. Hank sat quietly for a moment..."OK. thanks." and turned around to finish his homework. <br />
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I imagine that Hank has a lot of questions...I just wish I had better answers! But with that said...I think it's good that Hank is asking...facing another surgery is daunting...and I want him to know that we don't take these decisions lightly. But we know we are doing the best thing that is available to us. Hank is in such good hands with Dr. Siebert. I can't even imagine what his life would be like right now, if we had never done that first surgery!<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiNS57LVvUPLpBVXq1jPGxyowxYtTxIBQcyQyNyHu3Giiw52ynEosc010T3YM56pxpMiimsQHkzzErqjtXHSfqyc0XhA2aM6siiSN1UYAaUC71Vp8WaGAM1vWIdZUWuPnT3Yn8KqFatervs/s1600/2012-09-28_16-28-07_896.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="225" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiNS57LVvUPLpBVXq1jPGxyowxYtTxIBQcyQyNyHu3Giiw52ynEosc010T3YM56pxpMiimsQHkzzErqjtXHSfqyc0XhA2aM6siiSN1UYAaUC71Vp8WaGAM1vWIdZUWuPnT3Yn8KqFatervs/s400/2012-09-28_16-28-07_896.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Hank got to enjoy the golf course!</td></tr>
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It's been a busy few months...we just had the "Inaugural Helping Hands for Hank Golf Tournament." We had such a great time with the volunteers and golfers who came out to enjoy the day at the beautiful Rancho Murieta Country Club. Thanks to our volunteers: My sister; Barbara Arthur, Anne Fiksdal, Danielle Morris, Michele Williams, Lori Alaniz, Beth McGaughey and Teresa Berry. I couldn't have made it through the day without you! And thank you to our donors, sponsors and golfers too! We learned a lot and can't wait to start planning the next one. Well...ok, so I can wait a little while...at least until we get back from Hank's surgery!<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgdQPydZgMZ3lhleivDa6k9VnVSujLPPmWp1NsuuSNfYWWgeUZJFfxULp1KKTTt-Xk_P_GqA3XGCh8Y7pEUCndRBOvDrhEJ8PQ90dHAfGUVY8UbthuFtbl6NRD76Y-nH3A3NsMQ68qb1i1I/s1600/2012-09-30_16-56-44_997.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="180" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgdQPydZgMZ3lhleivDa6k9VnVSujLPPmWp1NsuuSNfYWWgeUZJFfxULp1KKTTt-Xk_P_GqA3XGCh8Y7pEUCndRBOvDrhEJ8PQ90dHAfGUVY8UbthuFtbl6NRD76Y-nH3A3NsMQ68qb1i1I/s320/2012-09-30_16-56-44_997.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Maverick going off to "Dog Camp"...</td></tr>
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Speaking of...looks like I will be needing to wake the family in just a half hour! Guess I better go get ready to go! I will update the blog as we go!Terrihttp://www.blogger.com/profile/03013764786276300558noreply@blogger.com2tag:blogger.com,1999:blog-8956351798752751809.post-13886511464726746162012-06-24T13:38:00.000-07:002012-06-24T13:38:03.768-07:00Happy 11th Birthday, Hank!<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgJvA0YUZRZ-RsfqSE70Y-FL84rP0FxB4bV9luOAnzW0kDzlPlJ4rIy99oFECCD0Bk6Dl0zEnRUHqjNJVgiHyvwHysr3vrtVEI22Wp1iQKYxcEXZwEG-ys-qK9L2pO-2k4idThgisTtr2SF/s1600/11th+birthday.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="251" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgJvA0YUZRZ-RsfqSE70Y-FL84rP0FxB4bV9luOAnzW0kDzlPlJ4rIy99oFECCD0Bk6Dl0zEnRUHqjNJVgiHyvwHysr3vrtVEI22Wp1iQKYxcEXZwEG-ys-qK9L2pO-2k4idThgisTtr2SF/s320/11th+birthday.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Donuts for the Birthday boy!</td></tr>
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Today is Hank's 11th Birthday. Eleven years with this kid...We are so blessed! Hank has been through so much in the last few years...and yet he remains the same kid that he's always been. Someone once suggested to me that Hank was probably a more compassionate person, because of what he has been through...but that's not quite accurate. Hank has always been a very kind and compassionate child. Always the first to check on someone who is hurt, quick to cheer others up...sure he understands illness, surgeries, and recovery. And he is empathetic for those going through something challenging...but to say that he is <i>more</i> compassionate...no...always was and always will be...it's who he is.<br />
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Hank's entry into this world was traumatic at best. It was a long labor and he was not breathing when he was born. It was an emergency...lights flashing, loud bells and beeping and a lot of people running into the room. They held him up, with a quick, "It's a boy!" and whisked him across the room. "Breathe Hank, breathe!" the nurses quietly chanted. I remember looking at Jeff, "They just named our baby," I said. OK, so we were pretty sure if it were a boy, his name would be "Henry" and we would call him, "Hank"...but we liked the name Steven, too! Soon, we heard a small cry that turned into a loud wail...relief! But we weren't out of the woods yet. I ended up with a femoral neuropathy, which means my brain wasn't connecting with my legs, and really...I couldn't feel most of my right leg and half of my left..essentially paralyzed, which lasted for 3 months! And poor Hank...his head was so beat up from the doctors misuse of the suction thing...31 times, she used it. (The hospital's protocol was 3 uses)...and he was suffering from headaches at birth.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEigFbqewdEZf3wQqsmSLeDR70CnkCOUCIBZRfkvmoKhk-E3CxBDRvII-FyjrO8stXKyHShBkpll8fNAj2RY2THaZiiNT-9Cbp7YTBUbMP-zSzcYvTzSmoJ46pP4GNLSa_P2c-SR8Pqjzyue/s1600/Baby+Hank.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="217" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEigFbqewdEZf3wQqsmSLeDR70CnkCOUCIBZRfkvmoKhk-E3CxBDRvII-FyjrO8stXKyHShBkpll8fNAj2RY2THaZiiNT-9Cbp7YTBUbMP-zSzcYvTzSmoJ46pP4GNLSa_P2c-SR8Pqjzyue/s320/Baby+Hank.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Hank at 6 months</td></tr>
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<span style="background-color: white;">Yes, we could have sued the hospital, the doctor...the people that make that suction thing...but I always had it in my mind that it was OK...Hank was OK and that's all that mattered. But in the last three years, since Hank was diagnosed with Parry Romberg Syndrome...I have often wondered if that difficult birth, is what caused or triggered his PRS...There are cases of PRS that have started because of a trauma...and certainly, that was a big trauma!</span><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjvm0B_5YANbOlapvtdY4WDOf-BdcQaEw09rCkRNPr0eMhNMQQvxeHQMgPGUzmtLH_292izYLogjuFoaSu8P0TKrkqFyemWeZZ2IQ9MDPl2vOrB8MSoQwMCbXbNNFcjdLdNh0BPXpHbsvjA/s1600/P1010555.JPG" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjvm0B_5YANbOlapvtdY4WDOf-BdcQaEw09rCkRNPr0eMhNMQQvxeHQMgPGUzmtLH_292izYLogjuFoaSu8P0TKrkqFyemWeZZ2IQ9MDPl2vOrB8MSoQwMCbXbNNFcjdLdNh0BPXpHbsvjA/s320/P1010555.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Happy Hank!</td></tr>
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From that difficult beginning to a strong and stoic eleven year old boy! Hank has overcome so much and I am amazed by his strength...then and now! Health-wise, all has been quiet since his last surgery 2 years ago. But a new turn of events has us puzzled. Hank is having "ice-pick" headaches. They feel like someone is stabbing you in the head! It's terrible..and when he gets them, his hands fly up to the spot and he cries out in pain. It's all new...just the last three days...in the evening. Wonder if it's a food allergy (too much ice cream?) or something else more sinister... I've been dragging my feet about taking him in to see his amazing surgeon, Dr. Siebert. It's been two years since he has seen Hank...we know Hank needs another surgery. The flap seems to have slipped a bit, making his eye appear droopy and his cheek needs "debulking". I was hoping to wait...Hank doesn't want another surgery. (who would?) So I was waiting...but now these headaches...it's time to go in.<br />
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I have made the necessary calls to schedule some time. We are waiting to hear when the Operating Room at the Children's Hospital in Madison will be available. We are hoping for July...to give Hank enough time to heal. If we can't get in before August, then we will wait until October and time it around Veteran's Day, when the kids get a day off. Our thought is that it would be tough to start 6th grade all bruised and battered from surgery...but 6 weeks into the school year, he can tell the kids he is going in for surgery and it won't be that big a deal. (keeping fingers crossed)<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhrZBkvEyYFM-i9gyDNz4YqBAyeoyw9RIy7YwlV8hd9jXKal4ncyhlydHpk9rfdzqN0vvOJO2xW0W_E3_2CJVYCCS5QF7tm_FeQGn31P88nsaDkhG5pavyLOi498P1uwkqHisujJgY4eAG5/s1600/P1010520.JPG" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhrZBkvEyYFM-i9gyDNz4YqBAyeoyw9RIy7YwlV8hd9jXKal4ncyhlydHpk9rfdzqN0vvOJO2xW0W_E3_2CJVYCCS5QF7tm_FeQGn31P88nsaDkhG5pavyLOi498P1uwkqHisujJgY4eAG5/s320/P1010520.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Hank and Lucy playing "Stratego"</td></tr>
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For now, we will continue to monitor the headaches and I am making an appointment to get Hank's eyes checked. Maybe he just needs glasses? (Thanks for suggesting that, Theresa!) Hank is enjoying the lazy days of summer. Swimming, eating ice cream, reading, cooking, playing video games, time with friends, sleeping in...staying up much too late...I love these days where I have all three kids at home! Hank has been digging around in the garage and found my old Parcheesi game and Stratego game. The kids think it is so fun to play the games that mom used to play at their age! (I think it's fun, too!)<br />
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We are thinking of all our PRS friends who are in Madison having surgery, recovering from surgery or scheduled for surgery this summer...Avery and Kristina, Justin, Kelsie and Christine. We are all so fortunate to have this life changing surgery available, under the competent care of Dr. Siebert. I can't imagine what Hank's life would be like right now, if we hadn't found Dr. Siebert! He is a hero to so many!!<br />
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Time to get back to celebrating Hank's birthday. The house is decorated with streamers and birthday signs. He has had his breakfast of donuts...the day is his! Whatever he wants to do..It's been an amazing eleven years with this boy...Hank has taught us what is important in life...he has shown us what true courage is...and I strive to be more like him!Terrihttp://www.blogger.com/profile/03013764786276300558noreply@blogger.com0tag:blogger.com,1999:blog-8956351798752751809.post-56174060822035222982012-06-05T13:44:00.004-07:002012-06-06T09:40:01.715-07:00Fundraisers and the end of 5th Grade!Having a fundraiser is always exciting. It's a chance to educate and raise awareness for Parry Romberg Syndrome. We meet amazing people and I am overwhelmed by the love and support...It is also a reminder that we are different. That we are that family that I used to read about in the newspaper...that is us now! I don't really mind that part...But it is a reminder that Hank has something that is deemed incurable...that he could possibly suffer greatly in the years to come...<br />
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Oh sure, we talk about it now and then...usually when I have been contacted by another family who is struggling to come to terms with the diagnosis and trying to make sense of it all. But I don't think Hank thinks about it all the time. (I don't really know...but he doesn't seem to...) Hank is too busy to be bothered by such things. He has video games to play, baseball games to play, drums to play, books to read, bikes and scooters to ride, and schoolwork to accomplish. Hank told me a few years ago that he is cured. I like the way he thinks. So in Hank's mind, he "used" to have Parry Romberg Syndrome. I want to believe that...and for the most part I do...but that worry in the back of my head is always there and that heaviness in my heart remains firmly rooted.<br />
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<tr><td class="tr-caption" style="text-align: center;">Hank and his pals having a blast at Funderland!</td></tr>
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On May 11th, we had THE<i> most</i> <b>amazing</b> fundraiser for Hank! The "Hope for Hank" Fundraiser took place at Funderland, a local small amusement park. They opened the park from 5pm-8pm, and all proceeds went to Hank. The mastermind behind it all was park owner, Ashley Edds. After hearing Hank's story from his former teacher (and Charlie's current reading teacher), Stacey Weller, this young woman took it upon herself to do something big for Hank. And big, it was! We are still grinning from ear to ear over the event! And people are still telling me how much fun they had! The park is small enough for the kids to go from ride to ride on their own, with their parents trailing behind. I hardly saw my own three kids that night, as they paired up with friends and had a blast!<br />
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<tr><td class="tr-caption" style="text-align: center;">Hank and Ashley Edds.</td></tr>
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Ashley advertised the heck out of the event and the turnout was tremendous! We knew about 40% of the people there...the kids' school friends, baseball friends, my friends, Jeff's co-workers...but the rest...the rest were all Ashley's doing. Ashley told me the park holds about 400 people...so that was my goal...and we hit 400 an hour and a half into the event! When it was all said and done, we sold well over 500 wristbands and probably saw at least 600 people enter the event.<br />
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<tr><td class="tr-caption" style="text-align: center;">Jeni paints Lucy's face with a beautiful butterfly!</td></tr>
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My friend (and fellow parent at school), Jeni Maxson, volunteered to head up a silent auction. Not only did she donate to the auction, but she got others to donate and then set it up and ran the whole thing! On top of that, she organized a face painting booth...and along with friend, Patty Rovegno, worked hard all night making kids happy. We are so grateful to all who participated and made this event so special!<br />
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May was a busy month...in fact every single day of May had something scheduled. The day after Hank's fundraiser, was his brother, Charlie's First Holy Communion. Such a special day, following a special evening. That night, we went to the Rivercats baseball game. (Minor league baseball team that feeds into the Oakland A's) It was little league night, so the boys got to walk around the field with their teammates before the game, as well as get autographs from the players and listen to the coach's "chalk talk".<br />
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<tr><td class="tr-caption" style="text-align: center;">Taking the field during Little League Night at the Rivercat's Game!</td></tr>
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Speaking of baseball... my last blog post was about Hank's baseball team and if we should invite them to Hank's fundraiser. I was torn...we didn't want the coach's or kids to treat Hank differently, if they knew about his PRS. I agonized over the issue and appreciated the comments and advice that people offered through the blog and our Facebook group. In the end, we left it up to Hank. Hank's decision was to keep it away from baseball...I think he just wanted a chance to "be like everyone else" and not be the kid who is having a fundraiser. So although we really wanted the league's support and his teammates would have had so much fun...I respect Hank's decision...after all..this is his life to lead, not mine. (I'm just a supporting player). I did find out after the fact, that a teammate, at the beginning of the season, asked Hank, "What is wrong with your face?" (ugh) According to his mom, Hank told him, "I have Parry Romberg Syndrome and had to have surgery." And that was that...Interesting that Hank never told me...but I think at this point he tends to protect <i>me</i>! Now that the season is over, and we can look back...I do believe that Hank's coaches and teammates would have embraced him and not treated him differently...but again...it was Hank's decision.<br />
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<tr><td class="tr-caption" style="text-align: center;">Hank's 5th grade promotion</td></tr>
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We did invite the coaches and players from Charlie's team and many of them showed up. So, we still had support! We were very fortunate to have lots of friends who posted flyers throughout our area, including the public school system, library, fire departments, police departments and downtown stores! As well as many school parents who printed out flyers and took them to work! We are so grateful for the help!<br />
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The last weeks of school were crazy...with three school age children, it is busy! Field trips, projects, class parties, championship baseball games, karate belt testing and Hank's 5th grade promotion! Whew! I'm exhausted just thinking about it. But now...now it is summer vacation. Already, the kids have adopted the lazy ways of summer and I am right there with them. We need some downtime!<br />
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We are awaiting word from Hank's surgeon on a possible surgery date. We aren't sure if it will be this summer or fall. Of course, summer would be better so he won't miss school...but as always, we will do whatever we need to do! *You can check out all the fundraiser photos on the "Hope for Hank" Fundraiser at Funderland tab at the top of this page.*Terrihttp://www.blogger.com/profile/03013764786276300558noreply@blogger.com2