Another turning point a fork stuck in the road..

We've hit a fork in the road and can't turn in either direction at the moment. We are being forced to wait right here, confused.

We saw an ENT today who of course couldn't shed any light on Bailey's choking/swallowing issues either. I don't know what number doctor that is but most definitely NOT the first one to tell me they are all just waiting to see what Bailey shows them in the future months and years to come before they can press forward on finding a diagnosis for her. I have faith that Bailey will eventually show her doctors the signs to make them run the right tests and find an answer to all of her problems in the last several months but right now just isn't that time. So I've decided to lay off of the pushing. I know my daughter is in the best care possible and they are doing everything they can for her. They have all told me numerous times that her "treatment plan" wouldn't change just because we have a "diagnosis" for her other symptoms. I don't know why I've found it my need to keep pushing and pushing. I just don't like not knowing what this is she may have and most of all knowing nothing about what it could do to her future. I've sucked her doctor's dry of answers and stumped 2 of the worlds best genetics doctors and I think it would be only fair to do what they have all told me to do, wait and see.

"Another turning point; a fork stuck in the road.

Time grabs you by the wrist; directs you where to go.

So make the best of this test and don't ask why.

It's not a question but a lesson learned in time."

Tough times don't last but tough people do.

So I've had a few days to try and adjust to all the change's we've endured in the last week so now I think it's time to update everyone on Bailey's hospital stay.
Although I have very little answers for anyone including myself. :(

Bailey was admitted for "failure to thrive" and choking issues Monday April 5th. We saw a string of doctors, speech therapists, and dietician's the first day. They inserted the NG tube and started overnight feeds from day one. She tolerated pretty well and didn't try to pull out the tube or anything.

Tuesday they didn't do much just more doctors asking questions and evaluating Bailey. Although they did decide to do an overnight video EEG because over the last 6 months or so Bailey has gotten these spells called "shutter attacks" and they wanted to try and capture them to make sure they aren't seizure related or harmful to her in anyway which the test showed they are NOT. Thankfully. They upped her overnight feed, she tolerated well again.

Wednesday Bailey had her first OR trip to have an endoscopy and pH probe study done. They took 3 biopsy's and inserted the pH probe for 24 hours. She was not a happy camper to have a tube in each nostril but she was as usual such a good strong girl.

Thursday evening we were able to go home after they pulled out the pH probe and I learned how to insert the NG tube. Unfortunately we left just as puzzled as we came but needless to say we were both thrilled to sleep in our own beds.

All tests came back fine, which of course is wonderful but again leaves us in a mystery. Children don't just choke to the point of losing breath every other day for no reason nor do they lose complete interest in food and swallowing skills. There is SOMETHING going on. All they can say to me at this point in time is it may be low tone due to the Arthrogryposis or it may be Neurological which I don't even want to think about.

We have TONS of follow ups with Nutrition, GI, Nurse, Speech Evaluation, ect. The feedings are going well but she has already lost 1lb 11oz since she was weighed the first day at the hospital. Her oral intake has decreased dramatically. I'm just so stumped. Look's like 50% of her calories through the tube may be upped come Wednesday when we go back to the doctors and the G tube is looking more promising for the future. But we will just wait and see what happens.

One day at a time, One day at a time...

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.

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.

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. :)

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 AMCsupport.org 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!

New found love & Arthrogryposis

Here I am 8 month's later, ready to write about our experience with a little thing called Arthrogryposis.

I was a high risk pregnancy from day 1. If there was anything that could possibly go wrong, I was already there. I was effaced early, put on bed rest, Had an appendectomy at 5 month's, just to name a few. The doctor's were completely convinced that this little girl would be gracing us with her presence earlier than expected. They never told me there was anything possibly wrong with the baby just that her abdomen was measuring a bit small.

On August 20th 2008 at 39 week's pregnant I went to Holy Cross Hospital thinking my water had broke. I was checked & they just weren't sure if it had broke or if I was leaking fluid. They decided it would be in best interest to induce me. I stayed over night, didn't make much progress until they started pitocin later on the next day. Then the fun began, I had HUGE complications with the epidural. It only worked on the left side of my body & caused me to pass out. Mine & The baby's heart rate dropped drastically. I was bombarded with doctor's & nurse's. I was told if it was to happen again it would be emergency c-section all the way. Thank Goodness it didn't happen again.

Bailey Grace Breeden came into this world at 9:36pm on August 21st 2008 weighing in at 6lbs 12.3oz and 20 inches long. From what I could see she was BEAUTIFUL. They swept her right away, Steven didn't get to cut the cord and she didn't get to lay on my belly but I was in such awe of her that I didn't even over-hear them talking about her hand's & feet. She looked perfect to me & I didn't want to listen, I wanted to enjoy the first moment's with my brand new baby girl. I knew everything was going to be just fine. Little did I know what God had in store for us over the next day's, week's, month's, & year's to come.

Once I got to see her not wrapped in blanket you could see that her hands were fixed upward & wrists bent back. Her feet were completely touching her shins. I had NEVER seen anything like this before. I remember being un-concerned until they attempted to feed her. She stopped breathing when they tried to feed her for the first time, she turned completely blue. They left her alone for awhile while they got a specialist to evaluate her, she got to sleep in my room with me for a few hour's until they attempted to feed her again. The same thing happened. In a matter of time they told me she would have to be taken to the NICU. My whole world spun around. I didn't want her to go to the NICU I wanted to do what all new mom's got to do. I wanted to take take care of her while she was in the hospital & take her home with me in 2 day's. I didn't understand & I didn't understand why she wouldn't eat. My emotional roller coaster started here.

Every time they fed her she stopped breathing. I later found out Bailey couldn't coordinate Suck, Swallow, Breath & need alot of jaw support. She had an extremely high palate, it was hard for her. You could tell eating exhausted her. They needed to monitor her & be there in case anything bad were to happen. I understood it was for her best interest. Her doctor in the NICU wanted her to be seen by all these people for her hand's and feet. The physical therapist gave her little splints, and had the nurses doing stretches from day 1. She had x-ray's & blood work taken. Her medical journey had begun.

August 23rd 2008 was the hardest day of my life. I was released from the hospital, without my baby. I had to leave her there. It was the hardest thing I've ever had to do. I called and checked on her every few hours & saw her every single day she was in there. The nurse's knew who the whole family was. Bailey was evaluated by a Genetic's doctor, Dr. Dina Zand from Children's National Medical Center. I unfortunately was home when she came to see her but she called me to tell me her diagnosis. Arthrogryposis.... WHAT!? I remember asking her to spell it & I remember not being able to pronounce it. It now is a household word. She explained what it was briefly and told me to stay away from the Internet. Searches would just scared me. I didn't listen & they did scare me horribly. She wanted Bailey to be evaluated by a Neurologists to determine if she could come home. Dr. Scheller came the next day & okay'd Bailey to go home. He told me she'd be JUST fine & that she didn't need to be here anymore.

I had to room-in with her for one night because she would be coming home on an apnea monitor that I had NO clue how to use. I aced the test of the monitor & on August 28th 2008 (her actual due date) I got to take my beautiful little girl home. We left with ton's of instructions & Lot's of appointments, it was ALOT to take in but I was glad just to take her home.

Bailey was off of her apnea monitor in a matter of a month. She coordinated how to suck, swallow, breathe all on her own without turning blue. I was SO glad to get rid of that annoying thing. She became followed regularly (every 2 week's) by Dr. Laura Tosi (orthopedist for feet)Dr. Dina Zand (Genetics), Dr. Robert Leshner (neuro-muscular), Dr. Hattwick (orthopedist for hand's), the infant's & toddler's program, and the Holy Cross Home program.

Dr. Robert Leshner gave Bailey her definite diagnosis of Atypical Distal Arthrogryposis. She's not the "classic" case of arthrogryposis. Her arm's/hand's are not fixed downward but instead fixed up "windswept" and her feet were completely touching her shins instead of downward. I didn't just have a baby with a rare syndrome but even more rare in the Arthrogryposis community.

The madness had begun & carried on for about 6 month's until Bailey started showing tremendous progress after casting/splinting & ton's of stretching. She now doesn't go to Children's but every 3 month's instead of every 2 week's. Bailey continues to have physical therapy twice a week & occupational therapy once a week. She wears hand and leg splint's for 9 hours a day & we do Lot's of stretching. Her feet have come down 95% she only holds all but her heel up when trying to stand. Her hand's aren't as tightly fixed backwards & most of the time nobody can even tell she has something wrong with her. Bailey has accomplished all of her developmental milestone's except propping up on her hand's, the strength just isn't there right now but it's still a work in progress.

Bailey has had alot of tests done. Ultrasound of neck & spine, Xray's of all extremities, blood work upon blood work, and a Electromyography all coming back without a horrible result & we're still in the process of the genetic testing. We're currently awaiting an MRI to be done May 27th 2009 to check her brain & spine.

Our family is no longer scared of Arhtrogryposis but excited for the improvement in the future. We aren't focused on the bad anymore but more so the good that will become of this. We have a very strong little girl. She goes through so much on a day to day basis and still manages to be an overall happy baby.