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Monday, April 25, 2011

April showers bring May flowers!

Time to play catch up yet again :)
I swear time goes by way to quickly!

I hope everyone had a very Happy Easter! The Easter Bunny visited our house, Bailey found her basket and thoroughly enjoyed her day with family!

On April 8th we headed to Shriners for Bailey's follow up. Thing's went well, Dr. vB was pleased with how Bailey was doing and suggested trying to see if she was ready to wear her AFO's for half a day. I didn't think she was ready to wear them that short of a time because she still walks completely on the side of her right foot without them on. He said the only way to tell is to try(I did try and after 2 days it wasn't looking pretty so we're back to wearing them the majority of the day with some breaks to try and gain ankle strength)! He is still talking about a tendon transfer some time between age 3 and 4 (no clue of a time frame) to try and force that foot to stay flat! He also said they are going to xray her hips when we go back in August to check on her hip displaysia. I'm REALLY hoping it has corrected it's self but we won't know until then!

April 14th was Bailey's transition planning meeting! Bailey's service coordinator, 2 teachers from Gorman Crossing Elementary and a lady from The Office of Early Intervention came to my house for a 2 hour meeting to talk about Bailey's options for school. We are of course going with the option for Bailey to go to pre-school in September with an IEP. We are un-decided on Head Start or sending her to Gorman Crossing Elementary. Leaning more so towards Gorman right now because of some of the things they offer and the time schedule of which she will go to school! We will have another meeting in June to make sure she is accepted to go with an IEP which she automatically will be because of her Arthrogryposis and then another meeting after that to draft her IEP and then have it submitted. So much work but SO worth it!

April 20th was a BIG day for Bailey (and me!) she had her follow up GI appointment! Bailey was 30 1/2lbs and 3 feet tall!!! I can NOT believe it! She is actually a little overweight but nothing major! She is doing SO incredibly good with eating and gaining weight! Thank you GOD! So Bailey's overnight feed got cut in half for the next 2-3 weeks then we will have a weight check and as long as she has gained or maintained the same weight we will STOP tube feeds all together until her next appointment in June where they will check her again and as long as all is well we will talk about saying goodbye to the Mic-Key button!!!!! I am SO proud of her! It has been a ROUGH year with weight gain, hospital stays, and feeding tubes but WE did it! I know we're not home free yet but it is so close I can almost taste it and I am so incredibly proud it's un-real!

April 30th Bailey & I will be doing the March for Babies walk and we are apart of her NICU team from Holy Cross! I am so excited, We did the walk last year and had a blast! We raised $350 this year which is $75 more than we raised last year!! It's great accomplishment and I look forward to doing this with Bailey every 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."