A very good friend of mine sent me this link earlier this week. It was a news piece about a family, who had a daughter with a very rare disease, that sent out an email looking for financial help to raise money for research on this disease. Not very unusual, I know. But this one […]
[Continue reading...]2010 ~ A Look Back
1 Jan by
Twenty minutes until the clock strikes midnight here. Everyone is asleep, even Daddy. We had a very quiet but nice evening at home with the kids. We had BBQ meatballs, potato chips, carrots and dip, and made-to-order ice cream sundaes! We celebrated the Disney Channel East news years, so the kids were able to […]
[Continue reading...]Lesson’s Learned
31 Dec by
I am ready for 2010 to be over with. It was a really, really rough year. If I listed the good and bad in a list, I will have to say that the bad definitely outweighed the good this year in terms of quantity. Daddy getting laid off in February and being unemployed for 7 […]
[Continue reading...]Cardiologist update
30 Dec by
We finally got a followup for Hannah’s ‘slightly enlarged aorta’ that was first noticed on our initial trip to the NIH almost a year and a half ago. It was my fault really. It was just not high on my list of specialists to get settled, but I knew it had to be done […]
[Continue reading...]Goodbye Haldol
29 Dec by
It has now been almost two weeks since we finished the Haldol taper, and she has been Haldol free. We have noticed some definite changes in Hannah, mostly positive. The good is that she hardly twitches when she sleeps now, so we are hoping that means we are getting her subclinical seizures under control with […]
[Continue reading...]Hannah and Elmo’s Four Ducks
29 Dec by
Move over Ice, Ice, Baby… Hannah now has a new favorite song. This one gets her even more excited when it comes on than anything we have ever shown her! You can see in this video as soon as she sees the still before Daddy presses play that she knows it is coming on. […]
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