Thursday, April 9, 2009

Its not easy

Tonight while I was giving Maryam her last bolus she asked for Honey Bear cup. I gave her the cup and after a few drinks she started choking on her water. She still has a really rough time drinking water when she's tired. She has to concentrate to drink as it is, so when she's tired she gets lazy and I think she just forgets that she's supposed to swallow it, not breathe it. The choking happened just after 10:30 and her poor little lungs still haven't recovered. She keeps waking herself up coughing. It just breaks my heart.
I forgot to mention in the "health update" entry that Maryam's pediatrician wants to keep her out of physical therapy and occupational therapy until she goes to CHOC. She, like Brett and I, doesn't want to risk Maryam getting sick again before she goes. We've been put back into isolation, which will be difficult but well worth it.
Oh and in case you're wondering about the picture, I took that one tonight. I said "make a funny face" and she screamed!

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