Sometimes life hits you right in the nose with the truth, and suddenly everything looks different.

I'm not sure where to start off with this post since everything we've been through in the last few weeks leading up to Bailey's big NIH appointment yesterday is all so fresh.. I'm finding it hard to put this all into words let alone make sense of the information I've been given.

Our appointment at NIH was overwhelming to say the least. The place is HUGE, I think we got lost 10 times throughout the day. They weren't joking when they said plan to be there all day, we were there every bit of 9 hours. They had our whole day planned out. Bailey had a PT evaluation to see what all she is able to do then we met with the team of nurses, students, and Dr. Bonnemann who took down history and did a physical exam. After the exam they did a muscle ultrasound of Bailey's legs, arms, back, and feet and then she had an EMG test done and blood work but most importantly at the end of the day we had a sit down talk with Dr. Bonnemann about all of the information they gathered and what he thought.

Dr. Bonnemann agreed that Bailey is a very complicated child, she has several "puzzle pieces" that just don't quite fit together; Atypical Congenital Contractures, Her waves of decline, and abnormalities showing in her muscles. There are some things going on with her brain that they are un-sure of at this time and the muscle ultrasound showed that some of Bailey's muscles are indeed damaged. He recommended that Bailey have 2 complex MRI's, a scan of all of her muscles in her body and a chemical scan to show any chemical imbalances in her brain or any mitochondria that is not present in blood work. After these scans are done which will take several months, they will decide on which muscle to take a muscle biopsy from. In the mean time they took blood work and will be running more complex genetic testing. After all is said and done we will see what he comes up with. As of right now he said he has no idea what Bailey has off of the top of his head. I am not in the least bit suprised of that but it never gets easier hearing doctor after doctor say that to your face.

I am pretty numb to the information right now, we will just take it one day at a time, do what he says, and stay hopeful. I do know she is definitely being seen by the best place to possibly find out what's going on! We have a long road ahead but that is nothing new! We will keep on keepin' on! :)

Happy Father's Day!

I just wanted to take a minute to recognize Steven. I spend so much time talking about Bailey that I don't always give him the full recognition that he deserves. He is my rock, he holds me together when I feel as if the whole world is crashing down around me. Even when he is feeling lost, hopeless and scared too he manages to hold it together for me! He knows just what to say to make it all okay. Bailey loves her Daddy so very much! She looks out the window waiting for him to come home from work everyday and anticipates their time together. She truly is Daddy's little girl!



Thank you for putting us first in your life and for always taking care of us.

Happy Father's Day!

Busy little bee

I don't have answers yet BUT I do have dates! :)

Cardiologist - June 27th
EEG - June 28th
MRI - July 9th
NIH - July 13th

Bailey is a busy bee on a normal basis but things are going to be back to being ridiculous all over again. I'm glad the appointments are made and they aren't far away at all!

I'm extremely glad that Bailey's MRI could be done before her NIH appointment so the results will be available and also that it's going to be on a Saturday so Steven can be there! She has to be sedated again because of her age, so hopefully there are no complications as there have been in the past.

Today was Bailey's IEP meeting! I actually made no changes (for once) to anything they put in front of me. Her goals and objectives were right on point and I feel confident in everything that was put on the IEP. We decided on how often she will receive therapy in school and what program was best for her. Everything is finished until Pre-school orientation. She will go to Gorman Crossing Elem. starting September 1st for 2 1/2 hours a day Monday, Tuesday, Thursday, Friday. She gets a nice break in the middle of the week which I think will be great for her especially considering her increased fatigue lately. She will continue to have therapy over summer until her birthday, August 21st. We are all really excited for her and I know I made the right decision in choosing to send her to school instead of keeping her home for another year!

I think I've finally gotten a grip on myself lately. I've been keeping busy and focusing on doing what needs to be done instead of over-working my brain on what could possibly be going on with my beautiful daughter. A friend of mine told me she often thinks "Things will be okay because they HAVE to be" and I couldn't agree more. Until someone tells me for sure things aren't okay I'm gonna keep myself believing everything will be just fine. I can't let this eat at me or I am no good in advocating for Bailey!

Until next time...

Waiting on a miracle

Sometimes it seems like you are the only one in the world who's struggling, who's frustrated, unsatisfied, barely getting by. But that feeling's a lie. And if you just hold on, just find the courage to face it all for another day, someone or something will find you and make it all okay. Because we all need a little help sometimes-someone to helps us hear the music in their world, to remind us that it won't always be this way. That someone is out there. And that someone will find you.

Everything is changing

People have been wondering what my emotional Facebook statuses have been about lately so I figured I would explain. I am having a hard time pulling myself together since Bailey's MDA appointment last month.

In just 2 weeks since my last blog post things have changed even more so with her. Along with her increased fatigue, falling often, and pushing off her leg for support she has shown some other changes. These changes have not only been visible to me but to her whole Infants and Toddlers team as well. She is most definitely having a decline. Whether it be short term or long term who's to know? Bailey's speech has become harder and harder to understand. Not every sentence is hard to understand but enough of them to frustrate her because we constantly are asking her to repeat herself several times in hopes to understand what she's saying. It's upsetting. She's been stuttering somewhat but that I can't tell if it's related or simply her processing what she's going to say. She's back to holding her mouth open the majority of the time, something we had worked so very hard to get under control so she could eat and drink safely.

Bailey just underwent several testing to get her ready to transition to pre-school in September and based on one of the tests Bailey is now showing a 25% Cognitive delay where as in September 2010 and every time she had been tested before that there was NO Cognitive delay present. I know 25% is not huge but going from no delay to a 25% delay is kind of a big deal considering all of the other changes going on. Her Neurologist is very concerned.

So we are on the more urgent list for an appointment at NIH, hopefully it will be sometime in July. In the mean time they want Bailey's MRI & EEG repeated and they want her to meet with a Cardiologist to rule out any heart defects that may be causing major fatigue etc.

I am... overwhelmed to say the least.

In better news Bailey's Eligibility meeting was Wednesday and of course she was eligible and will be starting pre-school September 1st. Her IEP meeting is June 15th! We also had an equipment evaluation today and Bailey will be getting a snazzy new adaptive stroller since she is outgrowing her umbrella stroller and desperately needs one now for even shorter distances. This stroller is pretty cool and she can be transported in it when she goes to school if I choose for them to do that which I think is awesome! They were limited on helping me with lifting assistance since Bailey is still so little but if things continue down the path they are going or when she gets older other adaptive equipment will be available to us at that time!

Thank you to everyone's unconditional love and support during this rough time for us! It is really very much appreciated and I will update when I have some more answers.

"I never saw the things my child couldn't do, I only imagined the things that she could"

Everyone has been asking details of Bailey's appointment last week so blogging would be the best route to reach everyone interested.

Bailey had her follow up appointment at the MDA clinic at Children's. She hadn't been seen since there since August (we had major issues scheduling a return appointment) so things have changed in almost a years time. I did go into the appointment with a a list of concerns including increased fatigue at all hours of the day which leads to falling often and leaning to support herself, pushing off of her leg while climbing the stairs if she can even make it up them without asking to be carried the rest of the way, and lastly her hips have been popping frequently and with mild hip dysplasia I was slightly worried.

Little did I know my concerns would turn into an appointment I wasn't really expecting.

The team was very concerned with the things I mentioned mainly the increased fatigue and are leaning towards considering it a decline and possibly an increase in weakness. They have a list of things they want to do including starting an energy supplement, several blood tests, and they are finally ready to send her to NIH (National Institute of Health). Bailey's Neurologist had mentioned back in September waiting on several tests to be done until a certain doctor was present at NIH who specializes in Muscular Dystrophy's. He could possibly be a help in figuring out Bailey's "underlying condition" other than the Arthrogryposis.

I'm excited that the doctor is finally here and that an appointment is in the near future but I'm scared because I feel like we are going to be starting all over again and this means MORE tests to put Bailey through. Tests that may not have ANY answers attatched or may have answers I don't want to see as well. I guess I just got used to the waiting game that I hate so much. Funny how that works huh?

Her hip popping seemed normal to the Physical Medicine doctor although I've never heard it before so I'm not completely sold on that answer but I did e-mail her Ortho doctor and am awaiting a reply since we are not supposed to head back to Philly til August. The Physical Medicine doctor also gave us an RX to have an equipment evaluation for assistance in lifting. When Bailey gets tired we carry her around unless we are somewhere we can use a stroller. Plus on a daily basis I have to lift her in and out of the car/car seat, bath tub, bed, etc. numerous times a day and although I don't mind doing these things it has really started to show some damage to my lower back so I'm excited to see what they suggest!

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! :)