Monday, May 18, 2009

CHOC days 12, 13 & 14

Friday's meeting had a different tone than the week before. I don't know what that means exactly, because neither Brett or I could put our finger on the difference. Disappointment maybe? Perplexity maybe? There is talk of having us stay a 4th week. The team has already received tentative approval from Kaiser and now the decision has to be made whether a 4th week would be beneficial to Maryam inpatient or out patient. I see both sides of the coin and am trying to stay out of the decision making process and leave it up to the experts. We'll know on Wednesday whether we stay or go.
They're trying to figure out if Maryam has learned all she can learn behaviorally or not, and if the stalemate in her progress is all age appropriate cognitive understanding. If it turns out that her issues aren't behavior anymore, which I'm starting to think is the case, then staying another week won't really benefit her any.
Saturday Maryam got a 4 hour pass to the leave the hospital! We took her to the Santa Ana Zoo! She got to hang out with her cousins, play on a playground, ride and elephant, run around and see lots of animals. She had a great time! She ate 6 pieces of pop corn and drank about an ounce of Pediasure. It was a good day.
Sunday Maryam got a 6 hour pass to leave the hospital! We took her to Disneyland. BIG mistake. She pooped out after only a few rides. I think it was a combination of exhaustion, heat and hunger. She started crying around 1:30 and didn't stop until around 5:30! We got back to the hospital at 2:30 because we didn't want her to be miserable. We thought bringing her back would help, but she just laid in bed crying. It was horrible. The doctor examined her but couldn't find anything wrong with her.
When she was all done crying she sat up and told me about her day! It was kind of funny. She ate a good dinner, and a bed time snack and went to sleep at her normal time!

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