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Wednesday, September 22, 2010

One huge busy mess

I have been un-able to update everyone on this last month of events because our lives have been far to busy to stay logged onto the computer long enough to type anything more than a sentence.

So here it goes...

Bailey saw her Neuro-muscular doctor for the last time August 19th. He is moving away and we think retiring. We were very sad to say good-bye because he has seen Bailey since birth and has done amazing things for her. We will have a new neuro-muscular doctor and we will still be seen in the MDA clinic at Childrens even though Bailey does not have MD.

As most of you know my beautiful little girl is not so little anymore and she turned 2 years old on August 21st. We had an awesome Dora birthday party/cook out and she had a blast. It was nice to see all of our family and friends.

We made a trip to Shriners at the end of August for a brace check and follow up. Dr. vB informed us that the muscle on the right side of Baileys right foot is not working and she will indeed need a tendon transfer around age 3 or 4. It was discussed before but never a definite. So for now we'll stay in the AFO's (she should be getting new one's soon) and keep trying to build up her strength.

On September 14th a day before scheduled G-Tube surgery Bailey woke up very sick and lethargic. We had tried to decrease her feeds over the previous 3 weeks to see how dependent she was on the calories that she was getting through her feeding tube. Evidentally over that 3 weeks she slowly but surely became very dehydrated and ill. On that morning it caught up with her and she was admitted into Childrens and recieved 3 bolus IV fluids to get her heart rate and blood pressure down and she recieved fluids overnight as well so that she would be well enough for surgery the next day. It was a very scary expierence.

She was able to have surgery, she had several complications after but was much better once we were able to get her home. She is doing well with the G-tube or her "Boo-Boo" as she would said. They upped her feeds because of her getting so sick so her oral intake has shown a dramatic decrease. We are still awaiting REM so we can get her into a feeding program at Kennedy Krieger in Baltimore since Children's won't hook us up with their feeding team.

On Tuesday Sept. 21st Bailey stared a Pre-School based program through Howard County called Tots Discovery. She will go Tuesdays & Thursdays for 2 hours and she will have a companion to help her out. She absolutely LOVED her first day! My little Miss Independent didn't care that I was leaving her at all she actually waved me goodbye and went about her business and was highly upset when it was time to go home. I know this will be a wonderful expierence for her to be around other children her age some disabled and some who are not.

That pretty much sums up the important things over the last month but she does have several post-op follow up appointments coming up and her annual review for Infants & Toddler. I'm interested to see what her "scores" are. I know I will be more than proud of the progress she has made over the last year.

"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."