Help Henry's Family During His Surgery

I am Henry’s Grandma, aka Gigi. His parents would never ask for help, so I’m doing it for them. I would love for them to be able to focus on Henry and his surgery and not have to worry about accommodations, food, and travel expenses, and all of the other extras that come up when traveling and staying out of state for 2-6 weeks.

We all have witnessed them give their absolute all to make sure Hen has had the very best care available to him, even if it meant the family had to live in their grandparents' basement. They have sacrificed financially as a family and continue to do so. I attribute Henry’s ability to walk today to the advocacy and love of his parents.

From Brit’s Facebook:

It has been 4 years since Henry's Cerebral Palsy diagnosis, and it's honestly amazing just how much he has accomplished in those 4 years. He's learned to walk and even run unassisted. He's played t-ball and ran in races. He's worked so hard to hit every goal he has set for himself.

Now Henry's going to show us all again just how strong he is as he goes through a huge life-changing SDR surgery, recovery, and rehab.

Last October, Henry went through a big growth spurt, and we started to notice some decline. He started tripping and falling quite a bit, his right foot started to turn in, he was struggling with balance and fatigue, and he was waking up multiple nights screaming about leg pain. We tried several different brands and dosages of Botox, oral medications, taping, strapping, different braces, and devices, and nothing was really helping. After another growth spurt in January, his doctor determined that his spasticity had significantly increased, and the Botox was no longer working at all. His ortho doctor also let us know that if we didn't do something else soon, the pressure being put on his bones was going to result in multiple corrective surgeries in the near future and could start to really inhibit his independence and mobility. After lots of discussion and prayer, together with his team, we decided it was time to look into SDR surgery. There are very few doctors who perform the surgery, so there are usually waitlists, and we knew we could be waiting a while. Especially once we found out the most well-known neurosurgeon who pioneered the SDR surgery was retiring (this past spring) and couldn't get Henry on his list. We were next directed to Dr. Bollo at Primary Children's in SLC. We met with him and his team and not only loved them but truly felt like this is where Henry was supposed to be. Dr. Bollo is an amazing neurosurgeon, but he only performs one SDR surgery a month and requires lots of testing prior to getting on his list. His team is very thorough and wants to make sure that SDR is the best option for your child, and we really appreciated that. We completed multiple tests and studies, and we were told after each one that they couldn't believe how brave, strong, determined, and hardworking Henry is, especially at only 5 years old. They ultimately determined that Henry was an excellent candidate for SDR.

We were surprised but excited when they told us they thought they could get Henry in for surgery this fall and got the call a month ago that they could get him on the schedule for November 19th. SDR is a lengthy, intense surgery, and rehab after is just as intense, so we have been told to expect to stay down there for at least 2 and up to 6 weeks. Even though things are really crazy for our family right now, with my dad's death, our kids' busy schedules, and a baby due in January, we know this is exactly what Henry needs and where he is supposed to be. We are putting our faith and trust in our Heavenly Father, who we know loves and knows Henry (and our family) even better than we do. We are so grateful for the opportunities that have been presented to Henry and for all the amazing people who work with us on his team to give him the best chance at his best life. Henry's a rockstar, and we know he's going to do just as amazing with this as he has every other challenge and test he's gone through before.