I found this doctor, Dr. W., back east on the National Gaucher Foundation website. I had emailed him some questions back when we were first looking at Gaucher’s, and he emailed me back with a lot of details and information. So much so, that even my pediatrician (who I forward everything to) was impressed and […]
[Continue reading...]Gaucher’s type 3
7 Jan by
I’ve got so much information going around in my brain right now that I know I’m going to put something wrong here, so bear with me. We met with Hannah’s genetics doctor this afternoon, and he believes that Hannah has, most likely, Gaucher’s type 3 (life expectancy late teens to early adulthood). This is based […]
[Continue reading...]We have a diagnosis!
7 Jan by
OMG, I’m shaking as I type this. I just got a call from our genetic doctor’s nurse. “We have a diagnosis” is how she started the conversation. It is official. She has Gaucher’s disease! Even though Gaucher’s is still a rare and serious condition, there is hope and treatment! We don’t know what subtype of […]
[Continue reading...]Rough night tonight
6 Jan by
Hannah has had a cold for the past couple of days. Not surprising since I have had one as well, and it has been going around. You know, the run-of-the-mill runny-nose kind of cold. The problem is, like right now as I am writing this and she is lying in her crib next to me, […]
[Continue reading...]Skin biopsy — ready this week?
5 Jan by
Hannah had her skin biopsy on November 12th. They said it could take a month or so to grow out. I know that her cells are growing slowly, but they have GOT to be ready this week, don’t they? It has almost been two months. I’ve had a really rough time sleeping lately — partly […]
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