Our Fight against Gaucher's Disease type 2 or 3
We had our Make A Wish meeting with the MAW grant volunteers tonight. When I saw the three of them through our front door gate with a huge Minnie Mouse stuffed animal, Minnie balloon, and carrying an armful of toys, it caught me off guard! I just wasn’t expecting that! Not only did […]
[Continue reading...]Cooper passed away last night. I’ve mentioned him a number of times over the past year. He was Hannah’s therapy friend in Texas. His mom has been a huge support on so many levels. Many times when Hannah had PT at Texas Children’s, he would have OT (we had the same OT). He was an […]
[Continue reading...]We met with Dr. Raja, Hannah’s new neurologist on Thursday. Like every other neuro office we have had to wait in this city, we were waiting for over an hour before we got into the room. However, when he came into the room and sat down, there was just something different about his demeanor […]
[Continue reading...]You grow up thinking that you are always supposed to move forward in life. Rarely sideways, but never backwards. 2010 was a really crappy year for us financially (among other things obviously). With Daddy being out of work for 7+ months, paying double rent/mortgage on two homes for another 7 months, paying COBRA […]
[Continue reading...]I fell asleep soon a couple of hours after we got back from the fantastic fundraiser at the Children’s Specialty Center (more on that later). Daddy had to take Abby on an errand, and Ethan stayed downstairs playing on the iPad while Hannah was with her nurse. I woke up to Ethan screaming to […]
[Continue reading...]I am really starting to dread our weekly trach change for Hannah. We never seemed to have a real problem until the last few months where, for one reason or another, she panics when we take out the old trach and try to put in the new one. It happened again tonight. I […]
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