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Thursday, March 31, 2011

Same old song and dance...

Catch up time...

We didn't get to go to Shriners on March 11th because Bailey came down with a really nasty stomach bug and it was not ideal to travel 2 1/2 hours with a toddler who couldn't stop throwing up with out anti-nausea medicine. We got re-scheduled for next Friday April 8th. Hoping to run into some AMC families while we are there and of course ALWAYS hoping for good news. :)

Bailey saw her Geneticist on March 14th for her 6 month follow-up evaluation. She thought Bailey was doing extremely well and couldn't stress enough the fact that she couldn't believe she had seen Bailey since she was in the NICU and how much progress she has made! She agreed Bailey needs to go to pre-school in August and also stated she thinks swimming lessons would be helpful and give Bailey a sense of being free! She complimented me on all I've done for Bailey and how I've become such a great advocate for her needs which was really nice! Then as I of course anticipated she had nothing more to say... other than see you in a YEAR!

I'm gonna quote her evaluation note "A number of dysmorphologists and geneticists have been involved in her care and we do not have a specific etiology for her at this time for the Arthrogryposis" Unless enrolling Bailey in Dr. Bamshad's research program is gonna give us some kind of answer(doubtful) I don't think we will ever know why Bailey is the way she is. No one in the United States has been able to tell us why our daughter was born the way she was born nor why she seems to be the only match up for her type of Arthrogryposis (according to Dr. Hall). It is frustrating to not know especially when it comes to having to explain all of this to Bailey in the future. We just simply don't know!

BUT on a positive note Bailey is BAILEY and that will NEVER change.. She has made tremendous progress in the last 2 1/2 years so an answer wouldn't have changed a thing. It's just something I have always wanted to have!

"A mother's love for her child is like nothing else in the world. It knows no law, no pity, it dares all things and crushes down remorselessly all that stands in its path." -Agatha Christie

Wednesday, March 2, 2011

Hello world, how've you been?

I re-vamped the blog for Spring because it's right around the corner!!!! :)

I realized in the midst of my venting on my last post I didn't update on Bailey's RBI(Routine Based Interview). The RBI was held on 02/8/2011 and Bailey's OT, Teacher, Psychologist, a lady from the office of Early Intervention, My Mother, & Myself were present. It was also video taped for the one's who couldn't attend and for future reference. The interview was about an hour 1/2 long and it was a thousand questions about a day in the life of Bailey, her fits, her good days, and her bad days. It went very well and we made a list of things that concern me the most and we will be working them into Bailey's IFSP at her 6 month review on the 17th of March. They think Bailey needs further behavioral testing but I feel much better that it's not just terrible two's and I'm not going crazy! I actually felt like someone was on my side even though I know my family and friends are it was nice to have part of her team understand how I've been feeling!

We've just been doing therapy lately like usual and I signed Bailey up for a playgroup once a week and fabulous Friday's twice a month. Just trying to get her out of the house and doing some activities with other children around her age since she will in fact be going to actual pre-school in less than 6 months! We are working on where she will go now! I've started the application process for Head Start hoping she will qualify based on her disability since we exceed the income requirements! If not she has Gorman Crossing Elementary's pre-school program to fall back on! Things will not be finalized until probably June from what I'm hearing since we need to have several meetings to transition but I'm excited that it is close enough to start working on! If you even say the word school Bailey gets excited so I hope everything works out!

We are headed to Philly next Friday for a follow-up, I'm not expecting anything significant to happen but I'm always nervous since Dr. vB is the one to tell us when/if it's time for surgery on her stubborn right foot! We'll see what happens though!

Bailey's OT has been working on making hand splints since December(her hand doctor has never been a fan and will not put in orders for them to be made) with the weather and illness it has just kept being prolonged! The right one is finally finished which is her more involved hand and the left will be done this month sometime!

They are still trying to get her to close her hands/make a fist so the splints are giving her a good stretch in that position! Our plan is to wear them while she watches Sesame Street in the afternoon since she doesn't take nap! She will get to put a sticker on a chart each time she wears them til the show goes off! She likes that idea... for now!

"The smallest seed of faith is better than the largest fruit of happiness." -Henry David Thoreau

"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."