The Children’s Gaucher Research Fund (CGRF) is currently reviewing research proposals and is considering the funding of between $300,000 and $600,000 in scientific research. The dollar amount of funding will be dependent upon the quality and the compelling nature of the submitted proposals. The CGRF released a “Call for Research” on July 10, 2010, encouraging […]
[Continue reading...]Ugh, this dang movement disorder!!
1 Nov by
This movement disorder she acquired when she was hospitalized this summer is really doing a number on her. I don’t know if it is her actual choreathetoid movements getting worse or if she is just growing a tolerance to her medications (Keppra, Klonopin, and Haldol). Her balance is getting worse. So I ask myself […]
[Continue reading...]Great news, bad news
28 Oct by
Great news: No pneumonia! Hannah’s chest xray came back clear, so pneumonia has been taken off the table. We are still waiting on the cultures from her trach aspirate. Hoping it is not another nasty bug like the pseudomonas or MSSA, but she is already on the Cipro, so if it is, we will already […]
[Continue reading...]Possible pneumonia again?
27 Oct by
Trachiitis has struck…again. This is the fourth time in as many months. We had a great week of very little secretions, starting to eat baby food again, and we were just ready to start the passy muir speaking valve again after dealing with trachiitis for the previous 3 weeks. It started a couple of […]
[Continue reading...]Bedtime Dilemma
25 Oct by
Hannah is almost 2-1/2 years old now. She is still sleeping in her crib. But she is almost to the point where she has outgrown it, and she crashes into the sides when she moves around at night (we have bumpers around it). It is time to start researching options as to what is available […]
[Continue reading...]My Own Personal Minnie
24 Oct by
Tonight we took Hannah and the kids to our local Easter Seals Halloween Festival. We had been tentatively planning it for the past couple of weeks, and it was all contingent on whether or not Hannah would take her second nap in the afternoon. The plan was to leave around 5 pm-ish, and Hannah crashed […]
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