Reprinted from the RareDiseaseBlogs.net: The summer of 2010 saw remarkable activity related to the development of treatments for rare diseases. The U.S. Food and Drug Administration hosted a two-day public hearing for patient advocates, industry, academic researchers and others to voice their views on current procedures and possible ways to improve them. The Senate HELP […]
[Continue reading...]Transitions
7 Dec by
This has a big few weeks with regards to transitions in my life, both on a personal level and a parental level. Hannah’s good friend, Bertrand, graduated from Early Intervention today. Such a huge, huge milestone. Then I looked at my calendar. January 14, 2011. Transition meeting with Early Intervention and School District. […]
[Continue reading...]Seizure update and Genzyme meeting
4 Dec by
We had our meeting with Dr Brown today, Hannah’s new neurologist. This was a followup to the EEG done a couple of weeks ago. It was definitely a “very abnormal EEG.” But because it is mostly subclinical at this point (meaning, it is not showing visible seizure symptoms), we are not to get completely […]
[Continue reading...]Adventures with iPad-ing!
2 Dec by
Hannah, Ethan, and Abigail got an AMAZING holiday gift this year from my old (in years known, not age!) friends, Julie and Heather. An iPad! I so, so, so wanted to get one for Hannah because I have heard so many people talk about the amazing things children with special needs like Hannah can do […]
[Continue reading...]Lots of Docs and Therapy
2 Dec by
This has been an incredibly busy week for me and Hannah. So much so that when I realized tomorrow was actually Thursday already, it took me by surprise! Monday, she had her Cerezyme treatment. Slept the entire 2-1/2 hours. It was actually kind of worrisome towards the end because she was so exhausted that she […]
[Continue reading...]D#!@ Seizures!
25 Nov by
Technically, it is Thanksgiving day. I have to admit that I have been pretty shaken up by this whole “lots of seizures” thing. Especially when I was looking through my three cellphone photos of the EEG and found one that was completely filled with seizure activity for that period not just a quick blip. Last […]
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