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Thursday, September 29, 2011

Fall is here!

It's been awhile since I've posted anything..

Bailey turned 3 on August 21st, she had a Tinkerbell party at Clark's Farm. The kids got their faces painted, got to feed and pet all the animals, went on a hay ride, cow train ride, had pizza, cupcakes, and of course presents. Bailey had fun although it was pretty hot that day and she got worn out fast. Next year we'll try for cooler activities!

August 26th we met with a new Genetics doctor that her original Genetics doctor referred us to for an after hospital follow up. He didn't have much to say because all of the blood work that was done in the hospital that could have given him some answers were either incomplete or done too late after her initial symptoms. So he gave me a prescription to carry around that lists blood work to be done in case that ever happens again it will be done correctly and right away! He also agreed to no fasting for tests anymore and he wants us to record a food diary so a Nutritionist can go over it and see if maybe Bailey's missing or getting to much of something that would cause her to have a reaction if it's taken away. He was very nice but again we left with no answers!

We've been slowly decreasing her overnight feeds since she got out of the hospital and she has been tolerating that just fine. I'm not afraid of doing it slowly, I'm afraid of once it's done and gone completely.

NIH & Children's are still working together to coordinate her really important MRI's! I recently contacted the assistant and it shouldn't be too much longer before we have a date of when they'll be. I'm nervous for what they may or may not find but maybe it will push us in some sort of direction and it will determine which muscle they can do a muscle biopsy from!

Bailey started pre-school at the beginning of the month and she absolutely LOVES it! She wakes up everyday asking to get on the bus and go to school and she comes home everyday telling me all about what she did! I'm still getting used to not being as involved and trying to learn the school system and how Bailey's IEP goals are being met. I finally am communicating with her new therapists and I'm feeling better about it than I was at the beginning. I do believe she will need PT outside of school as well though.

I will update again whenever I have more news. :)

Bailey's last visits with a few of her therapists that have seen her since she was 1 week old

"Fall into me, my arms are open wide and you don't have to say a word cause I already see that it's hard and you're scared and you're tired and it hurts and I wanna be the one you reach for first."