Tuesday, March 27, 2007

Hope

Hope has been struggling a bit lately almost to the point of regressing. The therapists said this is normal when she hits a growth spurt. The muscles and joints are focusing on growing so much that she loses some ability...if that makes sense.

She is drooling a lot again (could be teething, could be the CP or both), she is keeping her hands fisted again, she can't sit up well without support, her hamstrings are super tight, her neck is tight, She needs tightly swaddled for sleep, her legs are doing the 'frog legged' look when she crawls, sits, kneels, etc, and she hates to wear her clothes.....

so the thought on this is that she is growing longer and with that, the bones are growing, the muscles stretching and thus, becoming tighter.... And she has SID (sensory intregration disorder) so I get to brush her daily as soon as her therapist brings me the brush. She will also wear these neat pants called Hip Helpers that are like spandex bike shorts that have the legs sewn together. LOL!!! I bet that's comfortable! NOT! So that's next. The hand splint did not work, so we are not going to go there at all, despite the PT's insistance that we do. The OT is the one who orders them and she doesn't think it's needed. They do agree on the SID and hip helpers though, thankfully! They also both agree that sometime this summer, Hope will be fitted for at least one leg brace, maybe two and will likely require a walker for walking....

She has an MRI scheduled for May 4th at 9am and an Opthamologist appt in May as well. OH, and she will be seeing a new pediatrician. We also sent an application for treatment to the Shriner's Hospital in Philadephia.

All the while, we are told it is mild CP. I know this and knew this. Why does all of this seem so big for a mild condition? braces and splints and walkers and special pants and kinesio tape therapy and thickening her formula and brushing and swaddling.... it's just SO MUCH.

She takes it all in stride, which is amazing. I strive to be more like Hope. Smiling every day, waking up with laughter... and learning to just *be* once in a while.....
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