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"Squeek" 
Welcome to Daniels webpage. We call him "Squeek". Squeek was born October 17, 2004. Squeek was diagnosed with Hurlers Syndrome at three months old. In March of 2005, Squeek began enzyme replacement therapy. He had twelve treatments, prior to having a bone marrow transplant on June 10, 2005, at the Fairview Childrens Hospital at the University of Minnestota. Currently, Squeek is 100% engrafted with his sisters cells. However, his enzyme level is only 43% of normal.
Thanks for visiting Squeeks website.
Journal
Friday, December 12, 2008 7:24 AM CST Hi everyone,
We made it through our testing. Okay news on both the heart and the spine. Both remain unchanged in the past 6 months. Squeek did just great with all of his tests. He acted like such a little man. I am so very proud of him.
His heart doctor went over all of the future possibilities of what might come next as far as medication (not needed yet) to try to slow the dialiation down, and also what would take place if it gets to the point of surgery. This heart issue remains my biggest concern with Squeek, but I know that the doctors are watching him closely, and we have all the faith in the world in them.
As far as Squeeks spine, he will need to continue to wear his brace to help slow the curvature progression in his spine and prolong surgery. He has outgrown his old brace, so they fitted him yesterday (Thursday) for a new one. We go back at 1:00 today for them to do the finishing touches on it. We should be able to head back about 3:00 this afternoon. Getting us back home around mid-night or shortly after.
We are so very thankful that everything is stable at this time. Please do continue to pray for Squeek.
I want to thank everyone at Perrigos, that helped out so much with this trip. Everyone of you are a true blessing to our family, and you will never know how much you have helped my family get through everything. Thank you so much.
I need to get back upstairs to our room. Squeek is not feeling well, and had a bad night. He is just not acting right, and spent much of the night moaning and uneasy. He has absolutely no energy this morning and just keeps laying there and drifting off. Nothing like our normal Squeek. Hopefully it is just the cold-cold weather here. Mike is upstairs cuddling with him right now. Once I get back up there, Mike can come down here and get something to eat. We are taking shifts.
Thanks again to everyone.
Traci
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Hospital Information: Fairview Childrens Hospital
516 Delaware Street SE
Minneapolis MN 55455
763-782-9460
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