Friday, May 26, 2006

ERT 5/26/06

It is amazing how much stuff happens in two days. Most importantly Dani did wonderfully again today with her Enzyme Replacement Therapy. Even when they changed her dressing on her C-Line, which looked painful to me, she did not bat an eye. Gabe and Ethan went with us today. Hopefully that will be the only time they have to go, they did a fantastic job of being good and keeping themselves entertained. I can not thank the Bone Marrow Transplant Department enough for letting us set up shop there. We had her playpen, both of our laptops, a printer, the boys toys, and her stroller (with diaper bag) all there and it worked beautifully. So I will now proceed to tell you what all has occurred in the last two days.

We have received some wonderful contributions to Dani’s fund toward her getting typed and sent to the registry. I can not express my gratitude enough to everyone, especially Fonesys Communications (Rich & Robbie) and Scottman’s Jewelry Store. It is so hopeful how generous people can be.

And I did hear back about getting Dani typed and put on the registry. It sounds like the average is $39,000. They said it ranged from $17,000 to $78,000. I would imagine it depends on how long it takes to find a match. The good news keeps on coming.

I also talked to Trish in Belleville yesterday. Her son, Aaron, has Hurler’s. He is 4 ½ years old. He had his transplant in 2001 at University of Minnesota (they were the only one doing the procedure then) and did wonderfully. They were there 7 months.

Jason and I are planning on going to the open auditions of Deal or No Deal tomorrow at Casino Queen. Hahaha. Whatever we need to do to get her taken care of.

Keep in mind the Fundraiser on July 8th. When I get a flyer I will post it on here and probably send an email also.

Jason & Lexie Cox’s (Stefanie (my niece) and Jerome’s friends) are planning a fundraiser in Columbia. They have both been wonderful in working their circle to find us out as much information as they can. Miss Dani is ready to make her appearance whenever necessary.

I believe a Golf Tournament might be in the works also. I will post it here when I have more information.

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