Friday, November 30, 2012

I 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)

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!


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!

Monday, October 8, 2012

The Journey to Green Bay and the Miracles Along the Way

Day 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.

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!

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 "Our Lady of Good Help" . 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 miracle...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."
We headed down the stairs into a dark room, and there in front of us was a lovely scene. A beautiful statue of Mary, Our Lady of Good Help, 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!

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!)

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!

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.

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!

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!

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...

Saturday, October 6, 2012

2 Days Post-Op

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.


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! 

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.

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.

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!
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!

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.

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!

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!)

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...

Before stitches removal...
With Luann after stitches removal!

The elusive smile...!


Thursday, October 4, 2012

First Day After Surgery...


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  want 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!

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.

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.

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...

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!


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!)

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!)

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!

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.
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.

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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.

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 hadn't done anything...and I know there hasn't been any other choice...

Wednesday, October 3, 2012

4th Surgery Day

Surgery 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 Ronald McDonald House, as did Lucy and Charlie. By 11:30 am, we were out the door and walking to The American Family Children's Hospital. 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.

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.

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! 

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.

"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.

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!
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.

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.

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. 

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! 
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!

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!
 

Hank and I settled down to watch another movie. He, with ice on his face, and I next to him in a folding chair, working on this blog. After the movie was over, I sat down on his bed, facing him. "How are you feeling, Hank?" I asked, "Can I get you anything?" He reached up to hug me and I leaned into him and gathered him in my arms. I felt his body shudder and could hear the sob welling up inside him. "Oh no! If he loses it, I will lose it!" I thought. (I had already gone to the bathroom three times that evening to have a quick cry!) "What's wrong?" I asked, "Are you in pain?" "No," he whispered as the tears flowed. "I don't want to be here." (Me neither!) I told him we would be out tomorrow and back at the Ronald McDonald House. "Nooo.... I want to go home...back to California!" Hoo boy...can't help him there...we are here for another week! "This sucks!" I announced, "The whole thing just stinks!" He agreed...I told him I didn't like it any more than he did...but we would get through it. He calmed down and we just sat together...

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!

Tuesday, October 2, 2012

Night 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...!

Photo from the Ronald McDonald House in Madison, WI. 
We were quite happy upon our arrival in Madison to see the Ronald McDonald House 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!

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...

We took a tour of the hospital today. The American Family Children's Hospital 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.

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 want 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!)


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!

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...
I will write more tomorrow...prayers appreciated!

Monday, October 1, 2012

Heading 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...

Fr. Terry blessing Hank.
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 first 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.

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.

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!

Hank got to enjoy the golf course!
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!

Maverick going off to "Dog Camp"...
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!

Sunday, June 24, 2012

Happy 11th Birthday, Hank!

Donuts for the Birthday boy!
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 more compassionate...no...always was and always will be...it's who he is.

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.
Hank at 6 months
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!

Happy Hank!
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.

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)

Hank and Lucy playing "Stratego"
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!)

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!!

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!

Tuesday, June 5, 2012

Fundraisers 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...

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.

Hank and his pals having a blast at Funderland!
On May 11th, we had THE most amazing 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!

Hank and Ashley Edds.
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.

Jeni paints Lucy's face with a beautiful butterfly!
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!

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".



Taking the field during Little League Night at the Rivercat's Game!
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 me!  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.

Hank's 5th grade promotion
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!

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!

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.*

Friday, April 6, 2012

A Baseball Dilemma...

Opening day 2011!

Spring is here and things are busy! Hank and his brother Charlie are both playing baseball again this year and juggling their schedules is challenging. Both boys played last year and even though they were in different divisions, they were both "Dodgers"...which was very hard for their 'lifetime fan of the Giants' Dad, to swallow! This year we had high hopes that they would be on teams we can stomach cheering for...(it's hard to yell, "GO DODGERS!")...and were thrilled when we got word that Hank's team is the "Phillies"! We waited anxiously to find out what team little brother, Charlie, would be on. And were very surprised to find his team is also the "Phillies"! What are the odds? Different divisions...same teams....two years in a row!

Hank is improving in baseball. It's hard...three years ago, we didn't know if Hank would EVER play baseball! We had no idea how his disease would progress, if he would feel like playing baseball or if he would even be well enough to play... And really...three years ago, I wasn't thinking about baseball...I was thinking about "how can we stop this disease?"

After Hank had his surgeries, I was afraid to let him play. What if he got hit in the face with the ball? Would it damage all the work that's been done? Would it trigger his PRS again? So when at 6 months post surgery, Hank asked to play baseball, I was a wreck. "What? Baseball? Already?" Jeff and I discussed it...both excited that he was asking to play. Charlie had been asking to play for three years and we still hadn't signed him up either...poor kid! But at age 6, almost 7...Charlie was dying to play....so with a leap of faith, we signed both boys up. Baseball season started in March, 8 months after Hank's last surgery. I looked into getting a batting helmet that would protect his face. I know they make them...but in the end, we didn't do anything special, we just let him get in there and play!

He wasn't the best player on the team, but he sure tried and played with a lot of heart! He wouldn't always swing at the ball, but by the end of the season, he was getting some good hits. I will never forget one of the last games...where he finally made contact with the ball. The crowd went wild...we had been waiting for that kid to hit it all season! You would have thought we were at the World Series! I had only confided in a few parents about Hank's PRS...and those were the ones who cheered the loudest...appreciating what he has been through.
Hank and Charlie ready for their first games...March 2012
Which brings us to this season...Hank's skills and confidence is really growing. At the last game, he hit a double and brought in two runners! The smile on that kid's face was huge! Which brings me to the dilemma I am struggling with...and the whole reason I am talking about baseball... We have a fundraiser coming up on May 11th...it's going to be really fun...it's at a family owned small scale amusement park, called "Funderland" in the Land Park area of Sacramento. We are so excited and of course want to advertise it everywhere and would also like the support of the baseball league! The fundraiser happens to be on a Friday night, which is also when Hank has practice.  So what do I do?

Do I tell Hank's coaches that he has Parry Romberg's Syndrome? Just send them a link to "Hank's Story" on our website and invite them to the fundraiser? Or do I just say he can't make that practice and forget about trying to get the the league's support? (They have supported past fundraisers...but that was before Hank was in the league and his Uncle Mike was the league President.) Hank is playing AAA ball now...it's competitive. The coaches are great (we really like them)...and they seem to want to be fair...playing all the kids...but will Hank be looked at differently? Kids at school know he has PRS...it's not an issue...in fact I think most of them have probably forgotten all about it...and only one boy on the team knows about it and it's a non-issue for him as well...



This is a fine line to walk...we want to raise awareness for Parry Romberg Syndrome...we need to fundraise for Hank's upcoming surgery...it's not something to be ashamed of...and knowledge aids in understanding...but Jeff and I are at a loss at what to do...
So I open it up to all of you...what would YOU do?  I am so proud of Hank and all he has withstood. From his surgeries, to his educating his peers on his condition...to his kindness and understanding towards others...to his willingness to help other families who are struggling with this diagnosis...to his academic accomplishments...I could go on and on! I don't want HIM to ever be ashamed or worried about what he has...and usually it's not even the kids who say stupid things...it's the adults!

Are my fears unfounded?...Will he be treated just like he always has been? This kid has been through more than most adults...and I want him to continue to feel the normalcy that he has experienced for the last year and a half. Oh, I know...it's not an easy road and there are always the people who say the wrong thing...like the kid last fall who said to Hank, "You look weird in the mirror." UGH! Please...no more of that!!  What would you do if you were me?

Wednesday, February 29, 2012

The Difficulty of a Rare Disease

Imagine if you were told you have a rare disease. One that is so uncommon that there isn't much information about it. Suppose the doctor tells you to go home and "Google it" because that is where he is getting his information! What if he told you that there is no cure and the cause of the disease is unknown.  Now imagine it is your child that has been given the diagnosis!

30 million Americans have had this happen and 50% of them are children. Seems like a big number...but when you consider there are nearly 7,000 rare diseases..the number of people with a specific disease drops. Being told your child has a rare disease is mind-numbing. Being told that they don't know the cause and there is no cure is terrifying. And watching your child suffer while you stand helplessly by, throws you into a black void.

Hank and his siblings standing together in support of all those with PRS and other rare diseases!
Hank has Parry Romberg Syndrome. A disease that causes "hemi-facial" atrophy and neurological issues. In essence, it causes half the face to "waste" away. It can cause seizures, migraines, bone loss, blindness, tooth loss, migraines, ADD, ADHD and strokes. With less than 1,000 cases worldwide...it is extremely rare.
When  Hank was diagnosed in 2008, my family spent hours upon hours, searching the Internet for help, calling doctors, talking to friends...looking for someone who knew something! It was a horrifying and lonely time. Knowing that our 7 year old's face was changing...that his cheek was nothing but skin and bones...was the scariest time of our lives.

Hank's Dad wearing green for Hank!
Being the parent of a child with a rare disease can be isolating. No one else can really understand what you are going through. As hard as it is for us to accept what is going on...I have found it is harder for other people. When people ask what the prognosis is...we answer, "I don't know." When they get a confused look on their face, we respond..."No one knows." It's a hard concept to understand...in this day and age of modern medicine...why don't we know?  Even now, with Hank...he has had three surgeries, and is doing well...and when people ask how he is...I say "fine". But when they ask if he will need more surgeries...I don't know! That's the thing...I don't know! I wish I did...but I have no idea...I am seeing changes in his face...he needs a surgery...will he need another one after that? I don't know! I hate not knowing!


PRS mom and friend, Milly, shows her green and her support!
Today is Rare Disease Day 2012.  Rare Disease Day is about raising awareness worldwide of the common challenges and experiences faced by rare disease patients and their families. It is a day of talking about rare diseases...about getting it out in the open. It's about raising awareness...and acceptance for those suffering with a rare disease. It is about research...and generating interest and funds for research.

Having a diagnosis of Parry Romberg Syndrome is difficult...because no two cases are alike! I can't compare Hank to another child...because I don't know if their symptoms will be the same. Some have tissue involvement...some have tissue and bone. Does Hank have bone involvement?...I don't know! And trying to figure out why they all have PRS...it is a never-ending puzzle...some have similar experiences prior to the on-set of symptoms...all little clues...but we need someone to put it all together!

I am passionate about raising awareness for Parry Romberg Syndrome, in hopes of a cure...and in knowing the cause! We are so fortunate to have the Internet and places to connect online, like "The Romberg Connection." I am grateful for the other families, like mine, who are doing what they can to figure this disease out, to share information, to search for treatment and to support one another.

Green is Hank's favorite color. In honor of Hank and Rare Disease Day, we ask people to wear green today. Talk about this today with your family and friends. Share about this day with your coworkers and go online and look at the Rare Disease Day website. It's only through education and sharing information, will we make a difference!
"Alone we are rare...together we are strong."

You can support Rare Disease Day 2012 with just one click! Go to the RDD US site and click on the "Raise Your Hand" icon in the center of the page! By raising your hand, you have just shown your support for the 30 million Americans who are affected by rare diseases. Thanks to you, Lundbeck will donate $1 to rare disease research!
Click here www.rarediseaseday.us