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November 24, 2006
By Margot | November 24, 2006
Happy Day After Thanksgiving. We had a wonderful Thanksgiving day. We started out going to the park to play a big game of kickball with the Bonebrakes and several other wonderful families (most of whom we met yesterday). The boys had a ball. Sammy played kickball the whole time. He ran the bases and everything. Andy was in heaven on the playground and in the trees with his two best buddies from school Beau and Grant. Charlie rode around in the Baby Bjorn taking it all in and then fell asleep in his car seat. In the afternoon we went over to Colleen’s for an awesome Thanksgiving dinner and the boys all had a great time playing together. I think Charlie enjoyed his first Thanksgiving.
We are back in the hospital today. Sammy ran a low grade fever last night after we got home and we took him in this morning because we knew he’d need blood and his fever spiked so they admitted us. His ANC is 36. We’re hoping it’s on the way up and not on the way down.
We are very thankful we were out for Thanksgiving. Sammy is feeling fine. As soon as he got some blood in him (thank you blood donors) and some Tylenol he perked right up and was been in the playroom all afternoon with Mimi, (who so nicely came to visit) Andrew and Charlie. Neil is with Sammy and I’m home now picking up some clothes and games and letting Andy and Charlie get a little nap. Neil took Andy golfing this morning while Sammy and I were getting admitted and he’s wiped out.
Earlier this week Sam got his first infusions of Ascorbic acid (vitamin C). Dr. Willert approved us getting it at the hospital. Hurray! It’s so much more conveneint. Sam got 1 gram on Monday, 5 grams on Tuesday and we’ll go up to 10 grams on Monday after school (or in the hospital if we’re still there). The great thing about it is that there are no side effects and it’s supposed to greatly enhance the NB killing effects of Nifurtimox. We took Wednesday off from the hospital and I took Sam and Andy miniature golfing with Taylor and Samantha while Elizabeth watched Charlie. After golf we went on the Gokarts and the kids had a ball. Even Samantha braved it afer some serious concern and she loved it. Wohoo, Samantha! Grandma Sara left on Tuesday. She spent lots of time with Sammy in the hospital and taught him how to play chess which he loved. She was a great medical help too…”Margot, it’s not dripping.” “Yes, mom, it’s dripping.” “No, it’s not dripping, I can’t see it dripping. I’m very observant. I’m saving you hours here. It’s not dripping.” “Mom, Mom, it’s dripping. The machine beeps if the medicine isn’t dripping. Can’t you see it coming down?” “No. No Margot, it’s not moving. Nurse! Nurse! It’s not dripping.”
It was dripping. Thanks for coming out, Mom. The boys already miss you. Sorry we give you such a hard time ;-).
Here’s hoping we’re on our way up in counts and out of the hospital soon. We’ve been giving him beta glucans to help boost his immune system and he seems to look better than he did after the first two rounds but I don’t know if the whole psycho-sematic(I’m sure I didn’t spell that right) thing works on parents too. Sammy’s taking his hospitalization like a champ as usual. He sure has seen a lot of the hospital lately. One of our nurses told us when we came in this morning, “Welcome back to your home away from home.”
Neil is on his way to New York on Monday to meet with Dr. Sholler and Dr. Modak, do some more research and work with John London on getting some new promising treatments out of the pipeline and into some kids. He is truly amazing.
Off to bring Sammy some Mac and Cheese and fun things to do.
Margot
Topics: Progress Reports | Comments Off on November 24, 2006
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