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Thursday, April 29, 2010

Another turning point a fork stuck in the road..

We've hit a fork in the road and can't turn in either direction at the moment. We are being forced to wait right here, confused.

We saw an ENT today who of course couldn't shed any light on Bailey's choking/swallowing issues either. I don't know what number doctor that is but most definitely NOT the first one to tell me they are all just waiting to see what Bailey shows them in the future months and years to come before they can press forward on finding a diagnosis for her. I have faith that Bailey will eventually show her doctors the signs to make them run the right tests and find an answer to all of her problems in the last several months but right now just isn't that time. So I've decided to lay off of the pushing. I know my daughter is in the best care possible and they are doing everything they can for her. They have all told me numerous times that her "treatment plan" wouldn't change just because we have a "diagnosis" for her other symptoms. I don't know why I've found it my need to keep pushing and pushing. I just don't like not knowing what this is she may have and most of all knowing nothing about what it could do to her future. I've sucked her doctor's dry of answers and stumped 2 of the worlds best genetics doctors and I think it would be only fair to do what they have all told me to do, wait and see.

"Another turning point; a fork stuck in the road.

Time grabs you by the wrist; directs you where to go.

So make the best of this test and don't ask why.

It's not a question but a lesson learned in time."

Monday, April 12, 2010

Tough times don't last but tough people do.

So I've had a few days to try and adjust to all the change's we've endured in the last week so now I think it's time to update everyone on Bailey's hospital stay.
Although I have very little answers for anyone including myself. :(

Bailey was admitted for "failure to thrive" and choking issues Monday April 5th. We saw a string of doctors, speech therapists, and dietician's the first day. They inserted the NG tube and started overnight feeds from day one. She tolerated pretty well and didn't try to pull out the tube or anything.

Tuesday they didn't do much just more doctors asking questions and evaluating Bailey. Although they did decide to do an overnight video EEG because over the last 6 months or so Bailey has gotten these spells called "shutter attacks" and they wanted to try and capture them to make sure they aren't seizure related or harmful to her in anyway which the test showed they are NOT. Thankfully. They upped her overnight feed, she tolerated well again.

Wednesday Bailey had her first OR trip to have an endoscopy and pH probe study done. They took 3 biopsy's and inserted the pH probe for 24 hours. She was not a happy camper to have a tube in each nostril but she was as usual such a good strong girl.

Thursday evening we were able to go home after they pulled out the pH probe and I learned how to insert the NG tube. Unfortunately we left just as puzzled as we came but needless to say we were both thrilled to sleep in our own beds.

All tests came back fine, which of course is wonderful but again leaves us in a mystery. Children don't just choke to the point of losing breath every other day for no reason nor do they lose complete interest in food and swallowing skills. There is SOMETHING going on. All they can say to me at this point in time is it may be low tone due to the Arthrogryposis or it may be Neurological which I don't even want to think about.

We have TONS of follow ups with Nutrition, GI, Nurse, Speech Evaluation, ect. The feedings are going well but she has already lost 1lb 11oz since she was weighed the first day at the hospital. Her oral intake has decreased dramatically. I'm just so stumped. Look's like 50% of her calories through the tube may be upped come Wednesday when we go back to the doctors and the G tube is looking more promising for the future. But we will just wait and see what happens.

One day at a time, One day at a time...

"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."