Seriously, Hannah’s body needs a break! About 2 days ago, Hannah’s day nurse had mentioned upon leaving that evening (7 pm) that her G-tube area was looking a bit red, but it wasn’t warm and it wasn’t really swollen or anything. Just looked irritated. She told us to keep an eye on it. About 90 […]
[Continue reading...]Bumps in the road
17 Jul by
Today was a rough day. It started when we found out that the people who put the offer on our Texas house are terminating their offer because they “talked to someone on our street” who told them the reason we had lined our backyard with bricks was to control flooding during the rains, which is […]
[Continue reading...]Some bright spots
14 Jul by
We have had some happier news in the past couple of days, and it has been very welcomed, believe me! First of all, our Texas house is in escrow. Yep, it was put on the market on Saturday, and we had an offer on Monday. We countered, and we agreed on a price. We […]
[Continue reading...]The big “2” birthday!
12 Jul by
Two weeks from today, Hannah will be TWO years old. It really is amazing to think how the last two years have played out. Now more than ever, I realize how age truly is just a number. Even before this major setback for Hannah, she was not at a 2-year-old level. I see other […]
[Continue reading...]The drug question … again
10 Jul by
We met with Dr. Maller today, Hannah’s new local neurologist. She was very attentive to hearing Hannah’s long story, and she seemed to pay attention to all the little things along the way, which I appreciated. We talked about the oversedation, her Gaucher’s, and most of all the chorea movements and possible seizure disorder. She […]
[Continue reading...]Medical stuff
9 Jul by
Wednesday, Hannah had her first Cerezyme treatment at the Children’s Center for Cancer and Blood Diseases here in Las Vegas. We met Dr. Jonathan Bernstein, and I loved the man. He seems like just the kind of doctor I like to work with — very interested in learning more, outgoing, willing to spend quality time […]
[Continue reading...]
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