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Monday, March 1, 2010

Hello, almost a year later....

Well I created this blog and then never wrote in it again... what good was that? haha
Thing's got crazy in life and I honestly forgot all about the blog so here I am, attempt number 2 at trying to re-cap the last year of Bailey's life for everyone.

Since April of last year Bailey has had several tests done but most importantly an MRI of her brain that may or may not change our lives now and in the future. The MRI showed an under-developed Corpus Collosum (the part of your brain that connects one side to the other). We don't know much about it but it COULD cause major developmental delays amongst other things in her future.

Bailey has made such tremendous progress with her hands and feet that her doctors are leaning towards the fact that she has another diagnosis on top of the Arthrogryposis that may be Neurological do to the MRI results, expressive language delay, and now feeding issues again 18 months later. They have NO answers for us at the moment as to what this diagnosis may be. It's frustrating and we often leave the hospital in tears but we are trying to patiently play the waiting game.

In July of 09' I had the privilege of going to the Convention in Philadelphia, PA. We met tons of families and gained alot of resourceful information on our trip. I'd like to say it eased my heart a little considering these people have become family to me over the last year and it was great to finally see faces and not just pictures over the computer. They make the hard days much easier to get through!

While we were in Philly we got to meet with Dr. Judith Hall and Geneticist who has researched Arthrogryposis for over 40 years and she is the reason Bailey's doctors are now leaning towards another diagnosis. She thinks Bailey is rare, possibly the rarest of the rare. She's never seen a child quite like her. We are in contact through e-mail and she is such a sweet and caring woman. I'm SO thankful I had the opportunity to meet her and take in all her knowledge. I'm so glad she has chosen to follow Bailey's progress and speak to her doctors.

We are currently waiting to see if Dr. Bamshad of Seattle Children's Hospital is interested in seeing Bailey and possibly giving us new answers to what is going on. He was mentored by Dr. Hall so we are afraid he may not have anymore answers than she did but we are hopeful and patiently waiting for him to make his decision.

Since last year Bailey has mastered crawling, it started off rocky but she got the hang of it. Still slow speed but she got around. Now at 18 months she has started walking with the help of Shriner's made AFO's and lot's of practice. She isn't a perfect walker and we still have lots of falls but she's WALKING. My god it's a miracle. :)

In the last month we have approached an old but new conflict. As you can read in the previous post when Bailey was born she would not eat without choking and turning blue. Overtime this got better and slowly went away at least that's what we thought. She has had a few small episodes over the last year but nothing I thought was too serious. All of a sudden in the last month she has started choking again but it is almost everyday, not always to the point of turning blue but still happening. It is VERY frightening and has turned into a very serious matter. Last week we got a repeated swallow study done since the last one was at only a few months of age. It didn't really show much except a little residue staying in her throat after swallowing but no aspiration into the lungs or anything. You would think I'd be ecstatic over that but I'm not that happy. Since there was nothing found that either means its neurological or low tone in her throat. We go tomorrow for a GI consult and hopefully they will have some answers other than a temporary feeding tube as we were told. Honestly we'll do anything to stop the choking. It's just such a risk that can't be taken lightly anymore.

We also have an EEG scheduled for Thursday to out-rule seizure activity from Bailey's "shutter attacks".

We're headed to Shriners on Friday to get fitted for new AFO's and to show Dr. vB that Bailey is now a walking girl and hopefully he'll have some suggestions to keep her from walking on the side of her right foot. Her PT's are afraid she may be causing damage to her ankle walking like that but we'll see what he has to say.

We have alot going on this month but we're trying to take thing's one day at time and one step at a time.

I will update next week after all of her appointments to let everyone know what's happened and where we stand.

Thanks for all your support and strength!


"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."