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Friday, March 26, 2010

You find strength in your time of need.

Time for an update.

Monday March 22nd we went back to Shriner's to have Bailey's first cast removed and we ended up being shocked to find out her foot looked so good that a second cast was NOT needed! They fitted her for dual AFO's (daytime/night time) and adjusted her old one's to wear until we can pick up the new one's in about 4 to 5 weeks. Hopefully her foot will stay looking this good. She hasn't picked back up walking yet, her leg is sore but hopefully soon it will soon and she'll be back to her old self again.

It has been a month next week since Bailey's Gastro appointment and regretfully she has not gained a single pound, is still choking, and now is skipping meals since we have tried to change her diet around. Her doctor and I have been in contact through e-mail and Bailey must get the scope procedure and feeding tube for night time feeds since she has not made any significant progress in the last month. :( Bailey will be admitted to Children's National Medical Center April 5th for atleast 4 days to have both things done.

Please keep Bailey in your prayers as we get through this process.

Monday, March 15, 2010

Life is like a bowl of cherries.

Figured it was time for an update.

Bailey was seen at Shriner's Hospital on Friday March 5th. We originally thought we were going to get fitted for new braces but he took one look at her right foot and he was not happy at all. So Dr. vB decided to do serial casting on her right foot to try and correct her position in hopes of avoiding surgery. We go back the 22nd to get the 1st cast off and the 2nd put on. So far she has done really well with it. She was a little irritated the first day when she realized she couldnt walk around but she has since learned to stand and hobble around by herself.

Also, as I've said in previous posts, We've been patiently awaiting for Dr. Bamshad at Seattle Children's Hospital response. We recieved an e-mail from his assistant today stating that he believes Bailey does have Atypical Distal Arthrogryposis 2B. (i've never heard the 2B part and am currently awaiting a response on what he means by that) and that he doesn't feel making a trip out to see him would be of any help because her Genetics doctors here have done all the tests and evaluations that he would have suggested already. He did suggest she recieve another MRI in the future to monitor her brain development and here's the kicker... he wants us to consider enrolling Bailey in his research to identify specific gene alteration that could confirm the diagnosis of DA2B for for future children. I'm awaiting an e-mail of more information before I make that decision. I'm disappointed that we don't get to meet Dr. Bamshad at this time but I am thrilled to hear from one of the best Genetics doctors in the Country that Bailey's doctors have been doing everything possible from that stand point. :)

Thanks for reading, I will update when/if we recieve more information or other appointments.

Tuesday, March 2, 2010

Cookies, Ice Cream, & Calories... OH MY!

First off thanks for everyone who wished us luck and prayers for today's GI consult that I've been dreading for the last 2 weeks or so. It is very much appreciated!

I loved the GI doctor! She took notes, listened, asked questions, and didn't brush off my concerns.

We have 1 month for the following:

Choking wise - Start Prevacid incase it's reflux making her choke & Get an appointment with an ENT to make sure everything looks okay from that end. If there's no progress by then they are going to schedule an endoscopy/hp probe procedure and take it from there.

Weight gain/nutrition wise - We have to push a high calorie diet for the next month and if it hasn't helped what so ever she will have to have an NG tube put in for night time supplements.

The NG tube will be temporary as long as she makes progress, if not she will get a G tube put in. The procedure will require Bailey to be admitted at Children's Hospital for 3 days. She is at a 9% for her weight/height ratio and if she was any further down they'd be scheduling the tube to be put in now, instead she wants us to try all this out for a month and see where we stand after that.

So please continue positive thoughts, prayers, and crossed fingers while I try to fatten our baby girl up. :)

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."