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Wednesday, June 30, 2010

"When the power of love overcomes the love of power - the world will know peace."

First off I have to say I was completely blown away with love and support today. Today was the first annual Arthrogryposis Awareness Day, everyone was asked to wear blue to show support! For the last couple days I have logged on to see nothing but blue support on my Facebook page. People took pictures of themselves and their families wearing blue just for AMC and some just for Bailey! It brought tears to my eye's knowing that even though we sometimes feel alone in our journey we are far from it. Love is a beautiful thing in all essence of the word!

Only updates I really have are that Bailey was seen at Shriners on Friday 6/25 about her foot and to get her hips re-xrayed.

I was so nervous before this appointment and I couldn't for the life of me figure out why, we've had a dozen appointments more important than this specific one but for some reason I was really un-easy for days before this appointment.

Come to find out I was un-easy because there was something wrong, nothing to drastically worry about at this moment but still significant. Dr. vB confirmed that Bailey has hip dysplasia but is HOPEFUL that they are starting to come down by the looks of the xray. So they are going to keep a close eye on it and as long as nothing changes between now and next year they will just xray around her 3rd birthday and then talk about options of what to do if things have not changed. He was also concerned that Bailey is still semi bow legged and she is almost 2. He thought that may be contributing to her right foot issues. They changed her AFO's all up, added tons of new pads and built up the bottoms on the outer side of the foot on each one. She hasn't had them long enough yet for me to say what I feel about them but she does seem to be keeping her foot flat so far!! Hopefully they help and we don't have to go back for 2 to 3 months! :)

There are no more important appointments until August, thank goodness!

I will update in July on how thing's are going with her AFO's and if she starts doing any new thing's. She never ceases to amaze me, her vocabulary is getting bigger by the day. She is one smart cookie! :)

Thursday, June 17, 2010

"You just have to keep on breathing because tomorrow the sun will rise and who knows what the tide will bring"

Decided to update on Bailey since I haven't written lately.

She was un-able to have the G-Tube surgery done because her insurance denied it as not medically necessary to be admitted for the procedure. Children's won't do it as an outpatient service so they wrote the insurance company a letter and an appeal is in process, we should know something by the end of the month. Crossing my fingers it can be done in July because August is an extremely busy month of annual appointments and our trip to Florida.

We haven't been able to get an appointment with a Developmental Doctor concerning Bailey's behavioral issues until December. Everywhere in MD seems to be booked up or not accepting new patients. I'm trying Kennedy Krieger which I STRONGLY hope she can be seen there because they have amazing programs for behavioral and feeding issues. I'm awaiting a call back to see if they will accept her insurance and have available dates. Cross your fingers for us her fits are getting worse and more frequent. I don't know that I will make it to December sane if we can't get in before then.

We head back to Shriners next Friday to check out Bailey's feet and braces. So far I don't see an improvement which I'm not surprised, She can't wear her night time straps because they leave horrible sores since she is hyper sensitive. She is still continuing to walk on the side of her foot and it looks so painful as usual. Casting seems to be the next option but we'll see what is said.

Nothing else is coming up appointment wise.

She is still my goofy little girl. :)

"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."