Hannah’s Hook

It always amazes me how much joy people get from Hannah and, in turn, how much joy Hannah gets from certain people in her life. There is just something about her smile that just shoots you in the heart…every…single…time. I think it because you know that if Hannah gives you a smile, a hug, or […]

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Gook and sleep

Hannah has been really congested for the past few days to the point where she has been throwing up at least once a day or so.  Today was three times. But it is not normal throw up, as it is only mucousy stuff.  Basically because she either coughs out and swallows the gook she brings […]

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The Right Move

Daddy is out of town this week for training for his new job.  He left Sunday night and will be back late Friday night.   I’m so excited that he has a new job, one where he gets to work from home much of the time.  But being home for a week with me and […]

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Anoxia-induced stroke?

As I mentioned yesterday, Dr. Lopez (neurologist on Hannah’s Gaucher team at the NIH) came to visit with Hannah today at our house.  It was wonderful seeing her again, and it was a very positive visit from the standpoint that Dr. Lopez got to see Hannah being “Hannah” instead of tantruming constantly because of being […]

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Busy day tomorrow

Tomorrow is going to make for a very interesting and busy day! At 9 am, we have our first meeting with the Medicaid Case Manager regarding getting Hannah on the Katie Beckett Program (medicaid).  I have done enough paperwork to kill five trees already, and I have another stack that was requested by the case […]

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Hannah and Minnie

Hannah and Minnie Mouse have a special love affair at bedtime. Minnie (and Mickey) are the only stuffed toys that Hannah will play with and find comfort with.   Not only that, but Mickey and Minnie are, by far, her favorite characters to interact with.  Whether it be her Mickey Mouse chair that she loves […]

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