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Sunday, October 30, 2005 09:09 PM MST
Sorry it has been awhile since my last update. We have been busy trying to get everything done on the new house, the lease on our rental is up at the end of November.
Lauren is going to have to get new therapists and since we are changing school districts, all of her homebound school providers are also going to change. A few of Lauren’s therapists are going to continue seeing her in the new house.
Lauren had a fabulous time staying with my parents. And it sounds like her Mia and Papa had just as good a time. Her therapists told me Mia and Papa didn’t want to give her up for her therapy because they were having too much fun with her. We also had a great time with Nathan. I think the trip was really good for him getting so much one on one time with Mommy and Daddy. Next year we can all take a family vacation together again and that will be wonderful. It was hard not to feel like something was missing…“Our sweet little angel.”
Lauren has been doing really well. We have seen a big improvement in her speech since starting the ABA. Lauren has been running more and more and has started to jump on her trampoline. A couple of weeks ago we noticed a decline in her gross motor skills and she started losing her balance frequently. Lauren’s doctor had started her on creatine a few days before this started. We have discontinued the medicine and she seems to be back to her previous level. Please pray that this was just a reaction to the medicine.
I have been told that there was some confusion with my previous journal entry. Lauren has survived transplant and is no longer at risk for transplant complications. Lauren still has Sanfillipo and there is no cure at this time. We have been told that the transplant will stop the progression of the disease, but it cannot correct the damage that has already occurred. We are praying the genestein pill Lauren is on or another treatment in the future may be able to help Lauren more. We do have so much to be thankful for. We were told not to expect Lauren to make any improvement her first year post transplant and Lauren has gained new skills in every area. PRAISE GOD!
Please pray that we are able to find new therapists for Lauren and she is able to bond with them quickly, without having any regression in her skills from all the changes. Thank you for your continued prayers.
Love, Carrie
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