Here is an update on our sweet little Sam. She is doing really, really well. Therapy twice a week has made a huge difference. She is starting to crawl and pull herself up to a stand. Which creates it's own problems... In order to stand up, Sam isn't strong enough to do it "right". She has to lock her whole body and then she can stand. So when she gets tired or loses her balance, she just falls like a tree. Straight back. It's the saddest, funniest thing you've ever seen. It knocks the wind out of her and she bonks her head. Thus, standing is only allowed on the carpet... Her left side doesn't work as well as the right. We are working on that, and aren't sure what is causing the problem. She had an MRI, which she had to be sedated for. She did fine. I did not... But we made it through. It was normal, she has not had a stroke or brain injury and it looks like her brain developed as it should have. Her blood work has come back not normal however. I'm not sure what this means, but her doctors think she might have a metabolic problem. Her next neurologist appt. is on the 16th and I'll have more for you then... We are worried about her heart and circulation as well. Her feet are always freezing and turn dark purple. A lot. So, we are going to a pediatric cardiologist as well. She is happy and getting closer and closer to laughing. She is still really small. Just above the 5th percentile. Is she just little? or does it have to do with her heart? Or her brain? Her therapist dexcribed her "condition" a great way. "She not normal, but there's not a thing wrong with her..." Maybe one day we'll have answers. Until then, we'll just keep on keepin' on!
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Thank you so much for the update! I'm glad that she is doing well and there's nothing wrong with her brain. I will keep on praying for her daily! Love you!
I'm so glad you updated us. I've been thinking about her and wondering how she's been. I'm glad some scarey things have been ruled out, but hope you get some answers soon too. Glad therapy is going well. That place is awesome, isn't it?
Thanks for the update...We're always
wondering how things are going and yet hesitant to come right out and ask. How fortunate you are to live in an area where skilled therapy is available. I will keep Sam's name on the prayer roll at the temple.
No need to be hesitant to ask how our Sam is doing. We aren't sensitive about it at all. I don't want to make too big a deal out of it, so I don't post too often about her problems, but if you're wondering, just ask and I'll know it's overdue for another Sam update...
I love what the doctor said--I really think that none of us are "normal". We just hope and pray that everything goes well with Sam's development! Sounds like she is a joyful read soul, so rejoice in that!
Hey April Sevrin is very small and not necessarily due to his spina bifida. He however is in no percentile he is sooo small. He also has the same feet problem they always are freezing and turn purplish blue. we have to massage them every hour almost. I know it seems just that everything is due to his spina bifida but not all of his other problems are. Kinda crazy i guess the difference is she is using her feet Sevrin doesn't stand except at school in his stander so he doesn't use them anyway glad she is making improvements.
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