Spina Bifida Clinic 2017

Whew!

Spina bifida clinic #.... (who knows?) is in the books! Probably about 8 or 9?

As I watched and analyzed Seth over the past few weeks, I really realized there was no way on earth I could contain him in a small hospital room during spina bifida clinic for 3+ hours, without a nap, without him breaking something or making me want to pull my hair out. And I definitely wouldn't be able to converse with a doctor, let alone 8 doctors, about Evan's medical needs while also controlling the bundle of energy that is Seth. And it just didn't work out with Isaiah's work schedule to have him with us this time.

SO... an angel friend of mine stepped in and offered to keep Seth for the day. It was an AMAZING service.

Evan was anxious about his appointments. For as many times as he's been to clinic, it's been a long year since his last visit and he didn't seem to remember it. I prepped him as well as I could about what to expect, but the second he sat down on the ultrasound table for his first appointment, he broke down crying. I'm gonna call that PTSD. Regardless of what he remembers, he's been through a lot of medical trauma. I empathize with his hospital anxiety. He turned and held onto me, and eventually calmed down enough to complete the ultrasound and chat the ear off the ultrasound tech.

Post-ultrasound, feeling more brave

UCSF cafeteria between appointments

I had reassured Evan many, many times that nothing at clinic would hurt and he would not get any shots. When we went into clinic the nurse was taking his height and weight measurements and asked if Evan wanted to get his flu shot today. Evan adamantly affirmed he would NOT be getting any shots today. Then the nurse went to pull out a thermometer and Evan lost it again. I tried telling him it was not a shot, it would not hurt, and it would not make a loud noise. But he never did let the nurse take his temperature.

Since we didn't have Seth in the room as a distraction, Evan was really the focus of the doctors' attention. Since he's a little older, they were able to talk to him directly about their area of specialty. Along with productive discussions, Evan was such a storyteller! (Some true, some a little exaggerated) We had encounters with Batman, people bigger than the whole hospital, and fire-breathing dragons. We also discussed...

Dietitian: Good! (Eat more vegetables)
Social Work: Good!
School Teacher: Good!
Urology: None of your business! Ok, Evan was good there, too.
Neurosurgery: The neurosurgeon actually taught me something--he pushed on Evan's shunt (which I always thought they were just feeling the size of the bump) and said if it doesn't push down then it's clogged at the bottom. If it doesn't pop back up then it's clogged at the top. Evan's shunt is good!
Rehab: Wow, I don't remember him having such good ankle strength! Maybe we can consider a smaller type of brace. Why don't you talk to the PT and see what she thinks?
PT: He's tight here and here so work on these stretches. He does look stronger and a different brace might be good.

Orthopedic Surgery: Hmm...there's some tibial torsion and some turn in at the foot and have you had a hip x-ray recently? Let's check that they're in place since they look relaxed and are turning in his legs. Oh, and do you want to do surgery?

Um...what? Okay!

Osteotomy: So you know that Evan's legs and feet aren't straight. At birth this was called club foot. As he has gone through bracing and therapy its become more clear that it's not exactly his feet that turn in, but his tibia (lower leg bone). He has this turn in from the knee (tibial torsion) as well as hips that have a tendency to turn in--a double whammy, as the surgeon put it. When Evan wears his AFOs, it adds weight to his feet and makes his legs turn in even worse. The twister cables he wears help straighten his leg positioning. However, they are not like braces for your teeth which permanently change the position of his bones. His bones are already torqued and the cables are only a band-aid.

Osteotomy is a surgery where they slice the tibia at the knee and rotate it to be straight. It's 6-8 weeks of bilateral casts up to the thigh, full-time wheelchair. Then walking boots for some number of weeks, and then weeks/months? of recovery--relearning to walk with straight legs.

Crummy. BUT...his legs will be straight! He will not need twister cables for life. His bracing will be more minimal. His walking/running potential will be greater.

We still have some research to do on the risks/rewards to make sure this is the best thing for Evan, but I think sometime early next year we'll be doing it! We previously thought he had to be 7-8 for the surgery so it's a bit of a surprise for us, but we've pretty much known this is what his future holds, and I'm excited for him! (Read: TERRIFIED!)