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!