Our Fight against Gaucher's Disease type 2 or 3
Last month, I shared my idea for creating awareness here in Vegas for World Rare Disease Day. It was to have Ethan and Abigail’s school to wear jeans on 2/28 in recognition for Jeans for Genes day. I asked a friend for help on how to begin this, and with her help, it has […]
[Continue reading...]Hannah’s spleen and liver seemed to be getting larger again. We made huge progress in shrinking them down when she started her Cerezyme treatments back in February 2009, but I’m a bit concerned as to why they are starting to grow again. Dr. Bernstein, Hannah’s local specialist, scheduled Hannah to get a CT of […]
[Continue reading...]Remember that “rush” neuro appointment I set up a couple of weeks ago? We had our appointment today at 3:30 pm. We didn’t get into a room until 4:30, and the doctor didn’t come into the room until 5:05 pm. We left the office at 5:17 pm. See where this is headed? We […]
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Today was just a messed up day. We found out Friday night from our nursing agency that our Monday nurse is no longer coming on Mondays, “Oh by the way…”. So that means we have to train another nurse for Mondays, but since today was a Cerezyme day, I wasn’t going to have a […]
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Hannah seems to be doing even better today than yesterday. Even though her movement disorder is still pretty significant when compared to a few weeks ago, her personality is definitely coming back. Today she was playing with her iPad, reading books with her nurse and I at her little desk, and she actually […]
[Continue reading...]I don’t even know if “spatial security” is a real term or not, but it is the best way to describe Hannah’s actions right now. Hannah was a bit better today. She was more willing to play with her toys, and she would even crawl/scoot a couple of feet at times. She seemed to […]
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