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Welcome to Daniels webpage. We call him "Squeek". Squeek was born October 17, 2004. Squeek was diagnosed with Hurlers Syndrome on January 24, 2005. In March of 2005, Squeek began enzyme replacement therapy, recieving 12 treatments prior to having a bone marrow transplant on June 10, 2005, at Fairview Childrens Hospital, at the University of Minnesota. He then received an additonal 8 treatments following the transplant. Currently, Squeek is 100% engrafted with his sisters cells. However, his enzyme level is only 43% of normal. Currently there is not a cure for Hurlers Syndrome, and we pray each and every day for that cure to be discovered. Squeek continues to face many challenges, yet has been a true hero through it all.
We have been truly blessed by all the support that we have received by so many. A big "Thank-you" to all of our family, friends and co-workers, for being by our sides. We know that it is the many-many prayers that have been lifted for Squeek, that have gotten him through so much.
Thanks for visiting Squeeks website, and please continue to keep him in your prayers.
Journal
Monday, June 22, 2009 4:41 PM CDT Hi everyone,
Sorry for the lack of updates. We have been keeping super busy. I think that I missed Fridays update all together.
Our first appointment on Friday went well. It was with the bone-marrow doctor. He said that there is nothing to alarming, and that things, as far as his bloodwork, looked good. Nobody really has an answer for Squeeks low heart rate yet, so we are supposed to just keep an eye on him. It continued to be low off and on throughout the week.
We missed the endocrine appointment, as the bone-marrow appointment ran late. That doctor is going to take a look at some of his blood work numbers as well to let us know if there is anything from her end that we need to do. If there is she will call us.
After that we went to the spine doctor. Little change with that. He feels the brace is really helping to slow things down. We have to see him in another 6 months.
Todays appointment did not go quite like expected. We were expecting the doctor to say that Squeek needs knee surgery. He says that may yet be to come, but instead, he needs hip and ankle surgery. He said it will be about a 6 hour surgery if we combine it with the hands and finger surgery. It will be both hips and both ankles. He said that he will take on one leg and another surgeon will take on the other leg, otherwise it would be a much longer surgery. He said that with this getting corrected, it could help out the knees. He said we should plan to be out here for approximately 6-7 days assuming everything goes well. We have not set a date yet, as he is out to September right now with his schedule. Mike and I both have to look at our work schedule before we set a date.
So we are finally done with our appointments for now. We head out first thing tomorrow morning. We are looking forward to taking the boat back across, and then home again, and back to some sense of normalcy.
Thanks for checking in on us.
Read Journal History
Hospital Information: Fairview Childrens Hospital
516 Delaware Street SE
Minneapolis MN 55455
763-782-9460
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