I’m getting a bit angry that I haven’t heard back from Hannah’s genetics team about when she was to start treatments. Over a week ago, the genetics nurse told me she would get back to me the next afternoon. Of course, she didn’t. So, I emailed her the next day. No response. It would be […]
[Continue reading...]Orphan Drug Act of the 1980’s
20 Jan by
From the US Food and Drug Administration: The original definition of “rare disease or condition” in the Orphan Drug Act was amended in October 1984 by P.L. 98-551 to add a numeric prevalence threshold to the definition: “…the term rare disease or condition means any disease or condition which (a) affects less than 200,000 persons […]
[Continue reading...]Can freelance writing be a possible future for me?
20 Jan by
I’ve been racking my head for the past week trying to figure out what I can do to earn an income that will allow me to not only work from home but have the flexibility to take the time off needed for Hannah’s Cerezyme treatments, occupational therapy, developmental therapy, doctor’s appointments, and other procedures. Not […]
[Continue reading...]Nothing like a little organized chaos
19 Jan by
Because of the holiday, I had all three kids home with me today even though Daddy had to work. From 11 AM to 2 PM, Big Boy E had his best friend over who lives two doors away. During this time, from about 10 AM to 1 PM, Little Girl A was over at her […]
[Continue reading...]Hannah and mommy chatting
18 Jan by
While waiting for daddy to get her bath ready, Hannah and I had an in-depth discussion about life…
[Continue reading...]I admit it, I forgot about it
18 Jan by
I actually spent the better part of today forgetting that Hannah was sick with this horrible disease. We had a fun “family” day and went to a pizza place that we like that has carnival games with it. We used to go there about once a month or so. We did the same pizza buffet, sat […]
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