Maria is a funny girl! Late last night she yelled, so I went in and she’d pooped. Isn’t that wonderful that she’s been communicating so consistently lately?! I know that when she’s in bed and yells, it’s something–usually a poopy diaper. I’m so glad that she lets me know so she doesn’t have to sleep all night with a dirty diaper!
Tonight when she yelled, I went back and holy moly–she was on the floor, with her foot still in bed tangled up in the sheets. Thank goodness it’s a low bed so nothing (body parts) was broken, and hopefully not twisted (her leg). The most shocking thing is her bed rail has only about 8″ of space between the rail and the foot of the bed, so she crawled from the head to the foot and through the gap (looking quite pleased with herself, by the way). The gap at the head of the bed is more troubling, it’s narrower and she could get stuck in it. So I’m back to stuffing pillows in the gaps…
Monday our appointment with the neurologist went well. He “didn’t care” if Maria had seizures or not last week, didn’t want to change her meds. That’s what I like about him, he doesn’t overreact. He increased her dose of emergency medicine and ordered blood work for med levels and vitamin levels (probably not the right terminology). We told him how Maria was stiff and jerky last Wednesday and I told her teachers it seemed like she was getting ready to have a seizure, and voila Thursday and Friday they tell me she’s having seizures. He said there’s no such thing as “getting ready to have a seizure”. I again asked him if we were missing anything since his specialty is seizures; he said by the time a child gets to this age, there aren’t usually many new surprises. He went through the usual things associated with CP and hydrocephalus (don’t recall the details), but he feels confident that we’ve got everything under control. He said to come back in a year unless we feel the need to come sooner. He also recommended Maria get the H1N1 shot since she’s at such high risk and to watch her swallowing/aspiration/lung health; said she looked well fed and wasn’t as stiff as many of the kids he’s seen with similar issues. All-in-all it was a good appointment. Nanny Sue came with, which was helpful.
Today I kept Maria out of school (it was only a half day) to come to the appointment at Raising Special Kids. I met with Vicki to go over Maria’s individual education plan (IEP) to see what she thought of it, are there too many objectives, too few minutes with therapists, etc. I’m feeling frustrated with the amount and types of communications I’m receiving from teachers and therapists–am I expecting too much? She has a similar child who’s 13, so can relate. She gave me some good suggestions and resources. Raising Special Kids is a very good organization, quite helpful and caring.
From there, we went to sign the papers to refinance the house — 4.8% fixed (down from about 6.25%!!), which will decrease our mortgage payments by about $100/month!! Gary Ogami is the best mortgage broker. if you’re in the market and live in Phoenix.