Our Fight against Gaucher's Disease type 2 or 3
Today was Hannah’s infusion day downtown. After another night of very little sleep (maybe 4-1/2 hours), I was able to get the kids on the bus for school and drove downtown to TCH for her infusion. Of course, on this day, it was raining. What is normally a 1-hour drive to the Infusion Center turned […]
[Continue reading...]Daddy has looked at about a dozen home rentals in Vegas this past week. Our “plan” was to get a house in the school zone we wanted (the highest rated public school in Vegas) by paying what we are currently paying for our mortgage/property taxes. We want to be in the Green Valley ranch area […]
[Continue reading...]Yep, too tired to even type out the word exhausted. I have been trying for almost a week now to post on here, but each time I start, I just find myself with no energy to even chat. Daddy has been in Las Vegas since Monday trying to find us a house rental. He actually […]
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Okay, well that is just a tad bit misleading, but Hannah’s picture will be running in the Boston Marathon! For the last few years, Genzyme (the company that makes Cerezyme) has had a team run in the Boston Marathon. Each runner pairs up with a Genzyme patient to help raise money for NORD, the National […]
[Continue reading...]We went to the festival at the kids’ school yesterday afternoon. A mom that I have known since Ethan was in Kindergarten with her daughter (he is in 3rd now) asked me about Hannah. “How is she doing?” she asked me. She knew about Hannah’s condition, so I knew she was interested in more than […]
[Continue reading...]I find that when things are moving along without a lot of drama that I don’t find as much to write about. It is not for lack of anything really to say, but it is more that the “chaos” in our lives is more centered around moving to Las Vegas in June than Hannah herself. […]
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