The Road To Madison

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...

Hard to believe that surgery day is here...the road to getting here was quick and busy with fundraisers, birthday parties, packing, driving and flying!

The Gibbs kids and Roide Kids

The "Pizza with a Purpose" fundraiser for Hank 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!

Incredible staff at CPK

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!

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.

Father's Day snuck up on us and although we wanted to do something special for Jeff, we ended up just
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!

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...) 

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.



Waiting out the tornado

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.

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!

Hank's appointment with Dr. Siebert was good. Dr. Siebert explained everything to Hank and Hank
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!

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!!
Lights out...tomorrow is a big day!

The kids getting acquainted!

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...!

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...

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!

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!

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.*

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?

Changes?

It's Sunday afternoon, and Hank has been making me laugh all day. I love the weekends with these kids. Life seems to be so easy and carefree when we are living in the moment!

Hank and his siblings Christmas 2011

2012 is well under way and time seems to be accelerating! So much has been going on, as with any busy family...but my involvement with Parry Romberg Syndrome continues to be a daily presence in my life.
Hank is doing well. He had some school issues in the fall, which seem to be resolved. He is happy and growing like a weed! He made Honor Roll last term and we had a wonderful Christmas and New Years with family!

 I worry about Hank...he doesn't want any more surgeries and at 10 1/2, he voices his opinion. It was almost easier when he was younger...he didn't know what to expect and he didn't really say much about it. But now? Well, he really wants to just move forward and he is not looking back.  I hate to tell him that he needs another surgery. I was hoping that he didn't...even though his surgeon, after looking at photos said he would need a procedure this summer...I hoped he was mistaken...

But today...UGH...Today, I saw Hank across the store...and as he walked up to talk to his Dad, I was startled to see that his face has changed a bit. I've been noticing the changes...but they are so subtle, and I see him every day... Sometimes I think he looks perfect....and other times...like today...I just don't know!
Is it because he is growing? Or is it something else...Has the flap "slipped" a little? I do think he has some bone involvement, as his smile is a little more crooked...but I love that smile...! And Hank's eye looks a little droopy...I know it needs work...but do we wait until he goes through puberty or do we address it now? I don't want to wait until it's too late...but how late is too late? So many unanswered questions... That is what happens with a rare disease of unknown origins...unanswered questions...

But even with my worries and concerns...I know, without a doubt, that we chose the right course of treatment for Hank.  I can't even imagine what his life would be like right now, if we hadn't done the surgeries. Back when he was first diagnosed, I couldn't even imagine we would ever be where we are now and Hank would be the funny, confident, kind, handsome and energetic boy he is now! Although the surgery is not considered a "cure", it was the only chance we had to stop the progression...and with no other symptoms, things seem to be just as they should be.

Although Hank doesn't want to look back...he does want to help others. He has no problem talking to people about his PRS. We have been fortunate to be able to connect with other families with PRS and Hank willingly takes part. In November, I was contacted by a man who lives just two hours away. He was coming from his 5 year old son's appointment, where he had been diagnosed with Parry Romberg Syndrome. He was overcome with grief with the knowledge that the doctors they met with hadn't seen a case of PRS in 25 years. Feeling lost and needing to connect with someone who understood, I am happy to report that they found Hank and I! We talked for quite awhile and his wife was able to conference with us as well. I shared as much information as I could with them and listened to their son's story. I recounted Hank's story and surgeries...which are always emotional for me...and we shed tears together. I told them that since they lived so close, that we should meet when they are ready. I wanted them to see Hank and see how well he is doing...to have hope that there is "the other side" of all this.

The next morning, I saw that an email had come in at an early hour. "Are you available to meet? ...We will come to you." I quickly wrote back, "Of course!" This was a first for us and we were excited by the prospect of meeting someone who lives so close by! By 1:00 we were sitting at my kitchen table. Hank came in to meet them. He patiently let them look at his face. We talked about his surgery and he even graciously showed them the scar on his back. We compared pictures and talked about treatment options. But more than anything, I think we were able to give them some comfort and let them know they are not alone!

This is not an easy path we are on. I try to stay positive and look at how far we've come in all this. I don't dwell on  Hank's condition...I know he doesn't! His resolve and strength never cease to amaze me and I try to follow his lead. We are so lucky to have this little family of ours...so much joy and happiness in every day and laughter too!

We are so grateful for all that has been done for Hank...from his surgeries, to the support of other mothers of children with PRS, from friends and family and strangers too! This is defintitely not the life I would have chosen for my child...but it is the life we were handed and we embrace it willingly (what other choice do we have, right?)...being able to raise awareness in hopes of a cure...being the moral support for those going through it...and referring people to Hank's brilliant surgeon...

We have a possible lead on some research starting to isolate the cause of  PRS. If it comes to fruition, Hank will be a part of it. I don't want to say too much now...but am keeping my fingers crossed that it will happen! Please cross your fingers, too!

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Wednesday, February 29, 2012 is Rare Disease Day. In the United States, a disease is considered rare if it affects fewer than 200,000 Americans. Parry Romberg Syndrome is thought to affect less than 1,000 people in the US. Now that is rare! According to the National Institutes of Health (NIH), there are approximately 6,800 rare diseases...and while each one is rare...together they affect nearly 30 million Americans...or almost 1 in 10 people, 50% of them are children!

This year, we want to help raise awareness for rare diseases...and call attention to the fact that much research is needed for treatment. Please join our family and friends in supporting Hank  by wearing GREEN on Wednesday February 29th. Green is Hank's favorite color and he would love to know that there is a sea of green out there, just for him! "Alone we are rare. Together we are strong."