Tag Archives: hand use

A Body Bound by a Brain #1

  When people see a young child with Rett syndrome, parents often get “they look normal.” It’s almost like a question, as if questioning the parent that they’re child is actually disabled. It’s a weird sensation in that moment-there’s nothing … Continue reading

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T- ?hours:Musing 1- Hands are Clasped

Hand clasping is the signature sign of Rett Syndrome. It prevents most girls from using their hands. Katie is very, very fortunate to have pretty good hand use, incredible hand use if you take Rett syndrome into consideration. This morning … Continue reading

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It Will be OK

I’m looking at my right hand. There’s a two inch scar, now, down the thumb side, where they cut in and took a bone out. Oh, they explained the whole procedure, what they didn’t say is “it will look different. … Continue reading

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Animal Apps-Part II

Well, the excitement of a blizzard with hurricane winds is keeping us occupied today, but definitely no going out, can’t see much of my car anyway, lol and a long time to go. Katie’s favorite animal app is SoundTouch. It … Continue reading

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A Year in Pictures

Today ends Rett Syndrome Awareness Month, and a year since Katie got accepted into the NNZ trial. During this month, we (parents) post a lot about what Rett syndrome takes away, how difficult it is, how much it seems to … Continue reading

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My Heart is in Her Hands

¬†Fact: Abnormal hand movements. As the disease progresses, children with Rett syndrome typically develop their own particular hand patterns, which may include hand wringing, squeezing, clapping, tapping or rubbing.(Taken from the Mayo Clinic website) I have always been fascinated by … Continue reading

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Day 7

I’m tired as I write this and it’s only 6:50 at night. So much of importance happened today. First, it appears Katelin has regained her appetite, and along with it some behavior surrounding hunger. I am disappointed with this as … Continue reading

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