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Tuesday, October 23, 2012

Few and far between

It's been about 6 month's since my last update.. our life has been ridiculously busy! Bailey had a wonderful summer and on June 30th 2012 Bailey became a big sister to baby Addison Jayne :)

She is a GREAT big sister, she loves to help with feeding her, getting her diapers, and she loves to "play" with her and make her smile.

Bailey continued to have PT, OT, & ST throughout the summer at Howard County General Hospital, she loves it there and often doesn't want to leave when it's time to go. I'm so greatful that she can recieve outpatient therapy!

She took her very first vacation to Nana & Grandpa Steve's WITHOUT Mommy and/or Daddy! She had a blast and is still talking about it!
She turned 4 years old on August 21st, we had a small birthday party at our home with some family and she was so excited. She even picked out her own dress to wear!
Bailey was very anxious to start Pre-K at the end of August, she loves her teachers and has been earning her "Gordy Bucks" to get prizes! I love listening to her tell us all about her day when she gets home! She always seems so excited! I hope the thrill for school lasts for awhile :P
We decided to get Bailey put back in AFO's after 6 month's without them because she was falling frequently and starting to hunch over to keep her balance while walking. We picked them up at the beginning of the month, she picked them out this time and some sparkley shoes to go with them! She does have a slight curve in her back that they are monitoring and her hips are pretty tight so they are asking for more hip stretches BUT she's been walking with her back straight again! Well worth it!
Now for the real reason why I haven't updated in quite awhile... As everyone know's Bailey had a muscle biopsy done back in April and I was waiting for the results before I posted an update. We have gotten all of the results except for the one from the Mitochondrial Lab in New York. We do have some significant findings BUT we are awaiting the last results to put all the pieces together so that NIH can give us the diagnosis they have been thinking of. Have I said before waiting really sucks? Especially when it comes to your childs life! We are due back at NIH in December and this time around Baiely AND Addison will see PT and get muscle ultrasounds. They are looking at Addie just to make sure she doesn't have the same damage as Bailey does. I have no reason to believe she does but I am still extremely nervous that they will find something and turn my world upside down all over again! Steven & I are also going to give blood that day, Bailey is apart of a special gene study where they are going to look at all of her indivudual genes and are also going to comapre them to ours!

Bailey is also due back at MDA clinic in December for follow up!

I will update as results come in and things change!

"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."