Hannah has had a really, really rough last few days. She has been incredibly congested to the point where our last two nights were filled with her choking on her congestion, coughing, and rivers running out of her nose. Last night, I ended up having her sleep against me sitting straight up. Needless to say, […]
[Continue reading...]Hannah’s 3-month Gaucher Marker update
2 Jun by
We got the results from Hannah’s gaucher markers bloodwork. These are the three levels that are incredibly raised when the patient has Gaucher’s Disease. I’m waiting to hear back from Dr. Schiffmann on whether this is what he had hoped/expected, but they do look significantly down in just three months! From 2/9/09 to 5/4/09: Angiotensin […]
[Continue reading...]Finally, some positive news!!
2 Jun by
During Hannah’s Cerezyme infusion treatment today, Hannah’s genetics doctor, Dr. Christine Eng, came to visit Hannah to do an evaluation. It had been 4 months since she had last seen her. I can honestly say that she was very surprised at Hannah’s condition. She made the comment that (and I quote) “Hannah really looks wonderful” and […]
[Continue reading...]Busy week ahead
31 May by
After glancing at my calendar for this week, I realized we have a LOT going on. Monday – Meet with Dr. Eng, Hannah’s genetics doctor, before her Cerezyme treatment Tuesday – Ethan and Abigail’s every-6-months dental checkup Wednesday – Pam, physical therapy at TCH Thursday – 1] Pat, occupational therapy evaluation at TCH, 2] Jenny, developmental therapy from […]
[Continue reading...]Even sleeping, she is just adorable!
31 May by
Hannah has been sleeping in her crib for about 6 weeks or so now. Between my video monitor and our movement sensor, I feel quite comfortable having her in there now. She was just getting way too big to sleep in her pack’n’play overnight. She would roll around, and she is longer than the width […]
[Continue reading...]Hannah’s Surestep Orthotics fitting today!
30 May by
I took Hannah to her orthotics fitting this afternoon. Now that I am aware of her constantly rolling her ankles because of weakness (hypotonia), I can see why it will be a good idea for her. The procedure itself was incredibly easy. The orthotics specialist just took about 9 measurements on each foot and that […]
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