Cailyn rested and took a stellar 4 hour nap on Sunday, her week is usually crazy busy with school and therapy so I let her take a little break on the weekends.
Miranda tested out her sprinkler mat on Sunday and seemed to really enjoy it.
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| She looks like she's growling. |
1 comment:
Hi Jen, I found your blog when I Googled STXBP1 blog. I too have a daughter with an abnormality of the STXBP1 gene. We got the diagnosis a few weeks ago, and she is 10 years old now. I've glanced through your blog, and you seem to have had more additional medical problems than we have had. My daughter started walking sometime between 4 & 5 years old. I know there's not a tremendous number of children yet diagnosed, as it's so recently recognised, but quite a few of them have been able to come off epilepsy drugs. My daughter started weaning off them when she'd been seizure free for 2 or 3 years, and I think she's been off drugs for 3 or 4 years now. Even though she had numerous seizure types, including infantile spasms, all cleared (although her EEG is never normal). She developed a habit of hyperventilating when she was about 6 - doesn't bother her, but makes me feel out of breath. 2 years ago she developed a movement disorder (wobbly episodes), again similar things have been seen in other children. She is happy and sociable, and loves being out and about. As you say, having the diagnosis doesn't make any difference to your daughter, but I was really relieved to be absolutely sure it was nothing I'd done or not done when I was pregnant. With very best wishes from Kate, in the UK
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