Our Fight against Gaucher's Disease type 2 or 3
Hannah had an absolutely horrible night last night. She fell asleep at 1 am and was up again at 2 am. Finally fell back asleep at 5 am until 8 am. She has consistently had fevers up in the 101-102 range, and thankfully Motrin does work to bring it down. After reading up on […]
[Continue reading...]This is one of those days that the term “roller coaster” really applies to. Great Morning Hannah got in a good nap early this morning after waking up at 3 am “just because.” She had gone back to sleep at 5 am finally until 8 am. She then got another nap starting at around 11 […]
[Continue reading...]It has been confirmed that Hannah does have trachiitis, but it is the bug normally associated with ear infections and other normal child maladies. The good news is that the Cipro has definitely started helping, as we are seeing more energy and smiles from her. The bad news is that Abigail and Ethan are […]
[Continue reading...]Another milestone that we are reaching by Hannah becoming 2-1/2 years old (in just a few days) is that she is eligible for the Make-A-Wish program. What kind of wish would Hannah make? It isn’t something we could ask her, obviously. The one thing that keeps coming into our mind is Walt Disney World and […]
[Continue reading...]Never has a trach change been so dang stressful! After the fiasco a couple of days ago when she decannulated herself and turned hypoxic and blue, we have been on a race to replace the smaller 3.0-sized trach with her normal 3.5 size. Even though it may not seem like a huge difference, it really […]
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