Friday, October 19, 2012


October is Spina Bifida Awareness Month. I have been thinking a lot about what that means. I have never really made a big public announcement about Ryleigh's condition. I am not very active in the SB community. I did see this posted in one of the groups I'm a member of and thought it pretty much sums things up.

The thing is, I don't feel like a "Spina Bifida Mom." I do think I have a different perspective. I stop to appreciate the little things a bit more. I can see how easy it could be to take even the smallest accomplishments for granted. But I understand how something as small as this moment can be so special and amazing.

I guess I should say, this is a really BIG DEAL. With Ryleigh's lesion at an L2 vertebrae level, you wouldn't expect her to have much strength and use her hamstrings like that. This is functionality more like an L4 or L5 level, which is super awesome. We have been using electrical stimulation on her hammies nearly every day, and we just have to think that has helped with muscle strength. We have a lot of good things going for us, including a very motivated (and curious) child and an amazing physical therapist. We cannot even say the difference Gerti has made in our lives this past year. She is always pushing to try new things and and be aggressive with therapy options. The e-stim is something she has never even used on a child as young as Ryleigh. We are so so thankful for her, and for the First Steps program that helps provide services and equipment.

I say it all the time, but our daughter is one amazing kiddo. I can't wait to see what she'll do next!

love this goofy kid

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