Wednesday, June 25, 2014

Happy 13th Birthday Hank!

Hank is officially a teenager! He has been eagerly awaiting turning 13 and at long last has achieved this milestone! Sadly, we weren’t home to celebrate and Hank was still miserable recovering from surgery, but at least we were at our home away from home, The Ronald McDonald House in Madison!

Jeff and I got up early to decorate the kitchen and dining room with streamers and balloons and to hang up the “Happy 13th Birthday Hank!” sign that Lucy made. We hung more Happy Birthday signs in other parts of the house and waited for Hank to come downstairs. Since we have not acclimated to the time change…we have been keeping late hours…and getting Hank up and out of bed is not an easy task… Well, and I guess the whole, “recovering from surgery” thing plays into that as well…

Anyway, with a 10:30am follow-up appointment with LuAnn, the Physician's Assistant that works with Dr. Siebert, we didn’t have time to waste! Hank came down to the kitchen with Jeff, while Lucy, Charlie and I waited for them. Hank rounded the corner and saw all the decorations…and what was that? Did I see that? The faint start of a half-smile! Hank looked around the room, “Nice.” He said. We prepared a quick breakfast and sat down to eat. Jeff pulled out a gift and some cards to get the day started and Hank happily opened his first gift of the day. He gave us a smile and a thank you…and hugs all around. I had high hopes that today would pull him out of his funk…but I could see he was still glum as we prepared to go to his appointment… Getting stitches out has never been on Hank’s list of fun things to do…

We made it to the appointment with not a minute to spare. They brought us back to the room, where we waited for LuAnn…with all 5 of us crowded in there, we make quite an impact. The door swung open and Dr. Siebert walked in! What a happy surprise! He was all grins with a big “Happy Birthday!” and admired his handiwork. He carefully removed the stitches over Hank’s eye. The incision was perfect…thin and barely noticeable. Hank had a scar there before and when I mentioned it, Dr. Siebert responded with, “Oh, I cut that out and got rid of it.” I am so glad he did that! It makes a world of improvement already!

Getting those stitches out made a difference to Hank. He felt better already! He still needed to get the plastic wrap off his cheek, and the stitches in front of his ear removed, as well as the stitches running down his face between his eye and nose…but the fact that the stitches coming out did not hurt…was very important to Hank. Dr. Siebert told Hank that he would take the rest of the stitches and plastic off on Thursday. He talked to Hank about how he would look as he recovers, and Hank listened with great interest. With an appointment set to get the plastic off and the rest of the stitches removed, and with the obligatory photo taken of the two of them, we headed out to start Hank’s birthday celebration.

A few days ago, Hank confided in his dad that he didn’t want to go out because, “I don’t like the way I look,” and “I am not comfortable.” So, I didn’t have high hopes that he would want to do anything for his birthday. But as we walked out into the parking lot, Lucy and Charlie asked Hank if he would like to go to the zoo…”Sure!” he said, with a spring in his step. I was so surprised! And so relieved. Dr. Siebert has a way with Hank and I guess Hank just needed some sutures out and the reassurance that he would not look like this forever.

We spent the afternoon at the zoo, laughing at the prairie dogs, gazing at the big cats and  since the camels looked like they were talking to each other, we made up their conversations, putting the words in their mouths and cracking ourselves up. It was great! Hot and muggy and happy. Even with the plastic still on his face, Hank faced the day…and the stares... with courage and grace and was just Hank…newly 13 and having a good time! He even agreed to ride the carousel with Lucy and Charlie....the three of them lined up on their animals...and Hank's long legs hanging down...priceless!

Throughout the day, I would check in on Facebook to see the flood of well wishes coming in. I would read them periodically to Hank and he would say, “Wow!” or “Thanks!” each time. Hank suggested we go have lunch, which was surprising, since not only has he wanted to stay home since surgery, he hasn’t been able to eat…so this was a new thing! He struggled to fit the food in his mouth,(and ordering a burger with hot sauce probably wasn't the best idea...) but  he was able to eat a little bit of food, smile, joke around and just have some fun. Could it be that our Hank was back?

The big gift for Hank was a phone. He has been using Jeff’s flip phone for the last year and it is old and a pain to text with. He never complains but has mentioned his desire for an IPhone. However, we have told him a million times that we would not be getting him an iPhone…I would say that having surgery and feeling so down has actually worked in his favor….I doubt we would have given him an iphone this year…..but his mood, coupled with the fact that he is such a good kid...definitely worked in his favor! We couldn't wait to give it to him... and after running a couple of birthday errands...I had to get him a cake...We headed back to the Ronald McDonald House and had Hank come into the dining area. We set ourselves up at a table, while the community volunteers cooked away in the kitchen.  As we started to sing "Happy Birthday" to Hank, the volunteers joined in...and instead of 4 voices, there were 15! (Nice!) Hank opened some gift cards and then opened the last present...the iPhone. Speechless, he stared at it...and then with a sparkle in his eye and a big grin (as big a grin as a kid with stitches in his lip can do), he jumped up and hugged us. "Thank you! Thank you!!" he said with glee and gratitude! He immediately started texting his friends....and that is the last we ever saw of Hank. Just kidding...but it kind of feels like that when your kid has a phone... Later, Kristina and Brandon came by with a card and iTunes gift card for Hank...knowing he was getting an iPhone, they had to time it just right.
We had a late dinner and then got all the kids together for cake. And even though our group was turned out just right...with ice cream and cake, laughter and fun. We plied the kids with 9:30pm...and then had to send them down to the basement play area to burn some of it off! Hank seemed happy and more like himself than he had been for weeks...making me think that perhaps the worst was behind us...
The next day, we were up and ready to go. Hank got to share a little "Face Time" with his friend, Jack, from back home. I heard Jack say, "Wow Hank! You look so much better than you did the other day!" (that made Hank smile)...a local pizza place donated pizzas to the house and we had a very filling lunch...and then decided to get the kids out of the house and see a little bit of Wisconsin! We headed for the "Dells", an hour drive to the foothills, full of water parks...kind of like your average water park meets Las Vegas. Showy, glitzy, touristy...and full of water slides as far as the eye can see. Would have been great, had we not had a kid who just had surgery on his face and the last thing he can do is hurl himself down a waterslide!
So we found something we all could amphibious "duck" tour of the Wisconsin River. You know those boats with wheels that then can just drive into the water and be a boat? Yeah...that's what we did. Not the most exciting tour, but something we have never done...and we got to see some beautiful scenery. That, coupled with a stop at the Dairy Queen for some milkshakes...rounded out our day. Later that night, I came into the kitchen to find Lucy and her Dad, having milk and cookies for a little father-daughter bonding time. Just what that little girl needed...considering she did NOT want to go on that boat tour and did it under duress. (that is what I get for letting her watch the Titanic!)

 Thursday arrived with much week after surgery and the dreaded plastic wrap on the face and the last of the sutures were scheduled to come out. We made our way over to the University of Wisconsin Hospital, along with Kristina and mom Karen, who wanted Dr. Siebert to have one last look at Kristina's face, before we all departed for Chicago on Friday. We quickly navigated the state-of-the-art  registration process and check-in and sat down to wait for our favorite doctor. We were called back quickly and headed for the exam room. It seemed strange that there were only three of us, but with the World Cup playing, the younger kids stayed back at the house with Kristina's dad, Gene. The first nurse took a look at Hank and asked, "Is that plastic wrap on your face?" We all nodded yes. She stood up and got closer to Hank's face and tried to tug at it. "Hmm...I have never seen this before...I better ask someone else," she said and left the room. She returned with another nurse who confirmed that, "Yes it is plastic, we will let Dr. Siebert take that off," she smiled happily. And with that...both nurses left, leaving us to wait for Dr. Siebert.
We didn't have long to wait. He swept in gave hugs and got down to business. "You look great Hank!" Dr. Siebert exclaimed, "How are you feeling? Ready to get that plastic off and those stitches out?" he asked. ""Yes!" Hank answered, "Finally!" And so it began...the slow process of removing the plastic off the side of Hank's face. After what seemed like forever, but was really just a couple of minutes, the plastic was off. "Better?" Dr. Siebert asked. "Better!" replied Hank as he reached up and touched his cheek. Dr. Siebert made quick work of the stitches in front of Hank's ear. The sutures along his nose were a little trickier and as Hank winced, Dr. Siebert quipped, "Good thing you have a surgeon with steady hands doing this!" Hank made a sound between a chuckle and a good natured groan and with that, "All done!" was heard. Hank sat up and let us take a look at him. Wow! He looked so good! With the exception of the swelling, for the first time in a long time...Hank looks like Hank!
We all took seats and talked about Hank's recovery, what to expect, limitations, prognosis...everything. And for the first time, Hank was a part of the conversation. Hank asked some questions..."When can I swim? When will the swelling go down?" That sort of thing. My big question was of course..."Do you think this is it?" Dr. Siebert answered in the way I knew he would...positive but cautious..."I think so...this should last him as he grows." I inquired about bone surgery...and he responded by pointing out that Hank's eyes are even and his jaw and mandible are near the only real issue is the cheekbone...which is why the tissue was moved to that area. So maybe the tissue will mask the missing cheekbone and Hank can just live life. I know that a cheek implant of some sort is a real possibility, but at this point we just need to focus on the present and as always, but Hank in God's hands and trust that all will be OK. As we finished talking about medical stuff, the conversation switched to the Cubs game we were going to the next day. "Oh, we better check the weather!" he said, as he pulled out his phone. I watched as both Hank and he looked at their phones, searching for weather...(I don't know if Hank was really looking at the weather or playing a game, but the image of the two of them...sitting there like two old friends just cracked me up!...and in reality...they ARE two old friends...)

We took some pictures, chatted some more and then made our way out to the waiting room, where Kristina and Karen were waiting for us. Dr. Siebert took a seat across from Kristina and Hank plopped down next to him while Jeff and I grabbed seats across from Hank. He examined Kristina's face and they chatted about the swelling and when she could resume activities...conversation similar to ours. And then we all sat back and chatted about many felt like we were just sitting in our living room with great friends, instead of the waiting room of a hospital 2,500 miles from home!
I realize just how amazing it is that not only are we so far from home...and in the presence of greatness (because Dr. Siebert IS great)...but that our two families were able to go on this journey together!

It was a bittersweet goodbye on our part. We don't ever want Hank to have another surgery...which means we would not be going to Wisconsin again...and we would not be seeing Dr. Siebert again... But I think we WILL be seeing Dr. Siebert again...he is our only doctor navigating us through these treacherous waters. So although we won't (fingers crossed) have to come for surgery, I would think we will come back for a check-up...and take the kids back to the Dells, when Hank can actually enjoy a waterslide or two!!

We left the appointment and headed back to the Ronald McDonald House for our last night there...our last night in Madison. It had already been one week since surgery! It's amazing how time can drag on so slow...during surgery and the first days of recovery...and then speed up with each day that Hank feels better!  The Diaz family went off to make their own fun on their last night and we headed out to get Hank a case for his new phone. A trip to Target and Radio Shack completed the task and then we headed downtown for a last look at the beautiful University of Wisconsin and a tour of the state Capitol building. Fun fact: the exterior of the Madison Capitol Building is a replica of the Capitol building in Washington DC. (No wonder, it looked familiar!)

We had our last dinner in Madison, at the Ronald McDonald House. Hank had a chance to go into the "game closet"...a room filled with donated toys and games, for the kids who stay at the house. And then all three kids settled down for a quiet evening in the room, laying on their beds and playing on their tablets, while I packed the family up for our early morning departure to Chicago. Of course when the Diaz kids came back, Lucy ran out to join them for some board game play...Kristina and Lucy have hit it off and a strong friendship has formed!

As I finally laid down to get some sleep, I reflected on all that we had been through in just over a
week's time. Jeff's Birthday, tornadoes, surgery, Hank's difficult recovery and depression...Hank becoming a teenager...forging new friendships and seeing old friends...excited to head to a Cub's game, but wondering if a few more days of rest would be better...and appreciating the good people who work at The Ronald McDonald House and the amazing community of Madison who support it. That although I hate that Hank has Parry Romberg Syndrome and all that he has to is not lost on me, that everything happens for a reason...and if we weren't in this position, we would never have met the amazing people who have entered our life BECAUSE of Parry Romberg Syndrome.
Hoping that tomorrow's Cubs game at Wrigley Field will bring new and happy experiences for Hank, so that when he remembers this trip, the fun is what he remembers and the pain is a distant memory!
Let's go Cubs!!

Birthday cards and gifts from afar!

Donated Pizza and Ronald is watching!!

First Gift of the Day!

Late Night Birthday Cake Sugar High!

Madison Selfie!

The "Wisconsin Ducks" Tour of the Wisconsin River

Our "official" photo!

Hank was blessed with more cards and birthday gifts!






  1. I am so happy that Hank is getting better and hopefully no more surgeries for a long time if at all. Hank is one amazing young man that I am honored to of gotten to know and the rest of the family

  2. Wow, looking great Hank! Now you can get back to enjoying the summer!