Our Fight against Gaucher's Disease type 2 or 3
Hannah had her EEG today at her new neuro’s office. The past 5 EEGs she has had, including her 24-hour EEG in the PICU this summer, had all comed back normal. Today’s was not normal. Hannah had fallen asleep pretty much immediately after the test began, so they were able to get a clean EEG. […]
[Continue reading...]I shed happy tears today. I was watching some of the speakers from the National Gaucher Foundation Conference that was put online from the Gaucher Disease conference a couple of weeks ago. I would have loved to have been able to go, but there was just no way. Fortunately, Josephine’s dad was able to go […]
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I remember a time before Hannah was hospitalized this summer that I was so proud that Hannah did not need that many medications. She was just taking her Cerezyme (every two weeks), polyvisol (morning), Mylicon (three times a day), and Prevacid (twice a day). The last three by bottle. That was it! Fast forward […]
[Continue reading...]Because of Hannah’s trach, somebody has to do the ‘night shift’ with her. There are a multitude of reasons: On quite a few occasions, she has pulled out her trach at night. Since she has no breathing issues, we wouldn’t be able to tell. The trach hole (stoma) starts to close up very quickly, […]
[Continue reading...]If you could see my face right now, you would see that I am beaming with pride. We knew that Hannah’s skills were scattered, but for the most part they were in the 9- to 12-month developmental age area. But like her being able to read books and turn pages, this is a new […]
[Continue reading...]Three doctors in one week — my girl made it! Today we saw Dr. Dezenberg, Hannah’s gastroenterology doctor. Apparently, he is one of the few doctors that I have not changed since we have moved here! I love his personality, very easy going. Also, even though Hannah has a G-tube, she has very few […]
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