Saturday, April 5, 2014

Spina Bifida Clinic

Yesterday was Evan's follow-up visit at spina bifida clinic at UCSF. I love going to San Francisco. And I hate going to San Francisco. Clinic is great because it's a one-stop shop for all of Evan's specialists. Clinic is annoyingly long and tough on kiddos for that same reason. We are fortunate to have extremely boring and uneventful clinic visits most of the time. The docs come in and ask lots of questions, most of which we have positive responses to, leaving them with not much to do for us. For example, Evan is the only person with spina bifida I've ever heard of who doesn't either cath or have some sort of bowel management program. We waited an hour and a half while the urologist met with two other families. Our visit with her was 5 minutes max. There's just nothing she can help us with right now...for which we are SO grateful!

I'm often focused in this world of fetal surgery families whose children are so impressive in their physical abilities that I forget about how hard spina bifida can be. We don't experience even half of what so many spina bifida families go through. We met a new friend yesterday while roaming the halls. She is 15 months and has spina bifida. Her mom did not do fetal surgery because the girl is a twin so she didn't qualify. This girl had/has? a syrinx which is fluid built up in her spinal chord due to her chiari (pulled down hindbrain--Evan has this). She had chiari decompression surgery a few months ago to help but it's caused weakness in her arms and torso which causes difficulties in crawling, which she is just now beginning to learn. I admire her mom and realize over and over that we are just so, so blessed.

We're starting to collect some things for Evan's therapy at home. Some day (in my dreams) we'll have a large room to dedicate as a therapy gym for him. We bought an exercise ball to help with core strengthening, and a little indoor slide/climber thing. We also got a small coffee table that we'll cut out holes to put Tupperware containers in to use as a sensory/water table. My hopes is it will help motivate him to stand without realizing he's standing because he's just playing. Last, we're making some PVC pipe parallel bars for him to cruise along as he works on walking. I'll post pictures when we get them finished and get Evan working. We're also getting close to pool therapy time. :)

For my workout, Isaiah found me some sweet roller blades at Savers. We both go out with our blades with Evan in a jogging stroller we found on craigslist. Family fun for all! We also have nice road bikes to go with Evan's bike trailer and we enjoy cruising together.

Speaking of cruising...

video

video

I'd say these videos give a pretty accurate view of how Evan uses his feet. Sometimes they're in a great position and sometimes they drag a little bit. And I like to think he wears pants most of the time but these videos seem to reflect otherwise. Whatever.

We talked with ortho about his braces and they said there's a couple things they can try to help his feet stay in. The first option is to add a strap or change the straps to a figure 8 kind of thing. The other option is to put an SMO inside of the AFO (they'd have to be completely remade) and the plastic locks into the plastic and his foot should stay in place. These both sound like much better options than the casting I was fearing. I do think he needs the braces, especially on his right foot, to help keep his feet in a good position all day long. So that's our next step!


2 comments:

  1. This makes me so happy! I love the updates on how Evan is doing. Also, it's awesome that you go rollerblading as a family and are doing more biking. You guys rock.

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  2. He is such a cutie! I am so glad he is doing so well. It was fun to see you guys the other week!

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