Our Fight against Gaucher's Disease type 2 or 3
In addition to get Hannah’s new braces tomorrow, we are meeting with Dr. V, Hannah’s gastroenterologist, tomorrow afternoon. It is just a followup for her reflux, but I think I’m going to take advantage of this time to discuss Hannah’s feeding regression issues with him. I’ve become quite nervous about giving Hannah finger foods now […]
[Continue reading...]It is hard to believe that we are already planning our next NIH visit! I wonder what DC is going to be like at the end of February when our next visit is tenatively scheduled. It isn’t going to be as in-depth as our first visit back in July, but I think they are going […]
[Continue reading...]Our world changed exactly one year ago today…. We have a diagnosis! 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 […]
[Continue reading...]I think Ethan (9) and Abigail (almost 6) are really starting to be more affected by Hannah’s disease now, especially after this last 911 ambulance/ER visit. Unlike the first time, Ethan and Abigail were in the ER room when Hannah was being worked on, and they saw/heard much more this time. Last time, they showed […]
[Continue reading...]Hannah had another breathing/gasping episode Sunday night requiring us to call 9-1-1 again. We were at a restaurant when this happened, and by the time the paramedics came, her oxygen saturation was at 82% on room air (should be 98% to 100%). The paramedics started her on oxygen immediately so she went back up to […]
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