Miss Dani is doing well. She really good at pulling up in her crib now. And she has found her temper so if you are not doing it right she will definitely let you know... lol. She is cutting 4 teeth at the same time (2 on top and 2 on bottom) so not in the best of mood yesterday.
The boys helped me a lot this weekend (they still do not have tv & game although I gave in and let them watch Star Wars). We cleaned out all of their toys in their room. Well actually I took all of their different storage bins and dump them in the middle of the floor and let them resort. I gave them a weeks notice so they did not grumble too much. Although by the end I think they were not as picky on what they were throwing away. I had to go back through the bag and check that.
We got the duct work cleaned Saturday morning. Which was interesting and of course expensive. Then we got family pictures taken Saturday afternoon. They turned out really well. I will post them when Grandma Dunn has time to scan them in. We took the Mini Van in this morning to get regular maint and some recall stuff taken care of.
So I am working three days this week and then off until next year. Very scary to think of us having one paycheck coming in, but we will manage. Dani's schedule goes like this
Tuesday 10/10 - 4 hour Kidney function test and Body X-Rays
Friday 10/13 - She will be put under and do a Bone Marrow test and Biopsy, her ERT, bloodwork, and talk to Dr. Hiyashi about the final steps.
Monday 10/16 - Eye Doctor
Tuesday 10/17 - Dentist Appt
Wednesday 10/18 - Dani goes in for her Campath and stays until Sunday
More updates later .....
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Hello, my name is Rick and I am the parent of a post transplanted Hurler child. My son is 13 now and is in the 8th grade special ed. He has had the double hip surgery, knee stapled, pins in his ankles, and foot surgery. It has been a long road but we made over the tough spots. It is an ongoing trip though, always medical appointments and procedures. It does seem overwhelming at times, just focus on one thing, one appointment on small step at a time and you will make it through. I wish you and your family the best of luck,
Rick
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