It is official. Hannah’s “case” is being taken over by a new genetics doctor. She is a world reknown expert on lysosomal storage diseases, and the director of genetics at that hospital. The youngest patient she had ever seen with Gaucher’s was 6 years old, so she is very interested in working with us because […]
[Continue reading...]Auditory Brainstem Response Test
28 Jan by
I just got back from Little Girl A’s ear doctor appointment. She had a bloody granuloma (mass of puss) in her left ear last month that had to be cleaned out. Today was just a checkup. Both ear tubes are clogged with wax, so for the next two weeks, we are to put hydrogen peroxide […]
[Continue reading...]Did you know…
28 Jan by
New Genetics Doctor?
27 Jan by
I just got off the phone with our local Genzyme rep, really great guy. He is a clinician who works with Genzyme patients and the hospitals, sort of our liaison. He wanted to give me a heads up because he thinks Hannah may be being switched from Dr. G. in genetics to Dr. E., since […]
[Continue reading...]Letter to the Congressman…
27 Jan by
This letter is going to be presented to a congressman working on the bill I mentioned last night, HR 5748. I hope I made it powerful enough to catch his attention! Dear Congressman, One of my cherished roles in being a mother is to guide my three children on the path to following their dreams […]
[Continue reading...]HR5748 – First step towards change!
27 Jan by
I got a phone call from someone representing the Ryan Dant bill, HR-5748. She is heading to Washington this week to meet with a congressman about getting this bill moved forward. “H.R. 5748 would amend title XIX of the Social Security Act to permit States to exclude earned income in determining eligibility for medical assistance for individuals […]
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