Our Fight against Gaucher's Disease type 2 or 3
What a fun afternoon. Big Boy E spent the day (and night – a sleepover!) at his friends house, so Daddy and I took Little Girl A and Hannah to the zoo. The last time we were there, Hannah was still inside my tummy! It was also another first. We decided to graduate her from […]
[Continue reading...]I have started working on getting a plan of action together so if we do get the diagnosis of NPC (or another confirmed diagnosis) that I can have a head start on being proactive. I have no idea what my mindset is going to be if we get a terminal diagnosis — each time I […]
[Continue reading...]I got an email from the NPC supermom (Addi and Cassi’s Mom). She gave me a fantastic list of things to do to start preparing “in case” we do get a diagnosis of Niemann Pick Disease type C. It gives me something to start looking into right now because if we do get the NPC […]
[Continue reading...]November 12th. That was the day of Hannah’s skin biopsy. They said the skin biopsy could take about a month or so to grow out the cells so they could be tested for NPC and the other lysosomal storage diseases on that list. It has now been over 6 weeks since the biopsy, and I’m […]
[Continue reading...]Hannah had her first Christmas! Santa brought her some fun toys, and her favorite was this stuffed puppy dog that had sounds. It was priceless how she immediately smiled and grabbed with it with BOTH hands (new milestone!). I’m so glad I got that on video! The day seemed to go by really quickly, and […]
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