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! :)

Same old song and dance...

Catch up time...

We didn't get to go to Shriners on March 11th because Bailey came down with a really nasty stomach bug and it was not ideal to travel 2 1/2 hours with a toddler who couldn't stop throwing up with out anti-nausea medicine. We got re-scheduled for next Friday April 8th. Hoping to run into some AMC families while we are there and of course ALWAYS hoping for good news. :)

Bailey saw her Geneticist on March 14th for her 6 month follow-up evaluation. She thought Bailey was doing extremely well and couldn't stress enough the fact that she couldn't believe she had seen Bailey since she was in the NICU and how much progress she has made! She agreed Bailey needs to go to pre-school in August and also stated she thinks swimming lessons would be helpful and give Bailey a sense of being free! She complimented me on all I've done for Bailey and how I've become such a great advocate for her needs which was really nice! Then as I of course anticipated she had nothing more to say... other than see you in a YEAR!

I'm gonna quote her evaluation note "A number of dysmorphologists and geneticists have been involved in her care and we do not have a specific etiology for her at this time for the Arthrogryposis" Unless enrolling Bailey in Dr. Bamshad's research program is gonna give us some kind of answer(doubtful) I don't think we will ever know why Bailey is the way she is. No one in the United States has been able to tell us why our daughter was born the way she was born nor why she seems to be the only match up for her type of Arthrogryposis (according to Dr. Hall). It is frustrating to not know especially when it comes to having to explain all of this to Bailey in the future. We just simply don't know!

BUT on a positive note Bailey is BAILEY and that will NEVER change.. She has made tremendous progress in the last 2 1/2 years so an answer wouldn't have changed a thing. It's just something I have always wanted to have!

"A mother's love for her child is like nothing else in the world. It knows no law, no pity, it dares all things and crushes down remorselessly all that stands in its path." -Agatha Christie

Hello world, how've you been?

I re-vamped the blog for Spring because it's right around the corner!!!! :)

I realized in the midst of my venting on my last post I didn't update on Bailey's RBI(Routine Based Interview). The RBI was held on 02/8/2011 and Bailey's OT, Teacher, Psychologist, a lady from the office of Early Intervention, My Mother, & Myself were present. It was also video taped for the one's who couldn't attend and for future reference. The interview was about an hour 1/2 long and it was a thousand questions about a day in the life of Bailey, her fits, her good days, and her bad days. It went very well and we made a list of things that concern me the most and we will be working them into Bailey's IFSP at her 6 month review on the 17th of March. They think Bailey needs further behavioral testing but I feel much better that it's not just terrible two's and I'm not going crazy! I actually felt like someone was on my side even though I know my family and friends are it was nice to have part of her team understand how I've been feeling!

We've just been doing therapy lately like usual and I signed Bailey up for a playgroup once a week and fabulous Friday's twice a month. Just trying to get her out of the house and doing some activities with other children around her age since she will in fact be going to actual pre-school in less than 6 months! We are working on where she will go now! I've started the application process for Head Start hoping she will qualify based on her disability since we exceed the income requirements! If not she has Gorman Crossing Elementary's pre-school program to fall back on! Things will not be finalized until probably June from what I'm hearing since we need to have several meetings to transition but I'm excited that it is close enough to start working on! If you even say the word school Bailey gets excited so I hope everything works out!

We are headed to Philly next Friday for a follow-up, I'm not expecting anything significant to happen but I'm always nervous since Dr. vB is the one to tell us when/if it's time for surgery on her stubborn right foot! We'll see what happens though!

Bailey's OT has been working on making hand splints since December(her hand doctor has never been a fan and will not put in orders for them to be made) with the weather and illness it has just kept being prolonged! The right one is finally finished which is her more involved hand and the left will be done this month sometime!



They are still trying to get her to close her hands/make a fist so the splints are giving her a good stretch in that position! Our plan is to wear them while she watches Sesame Street in the afternoon since she doesn't take nap! She will get to put a sticker on a chart each time she wears them til the show goes off! She likes that idea... for now!



"The smallest seed of faith is better than the largest fruit of happiness." -Henry David Thoreau

Trying to find the calm before the storm

I don't have anything relatively new to share about Bailey but we are still struggling through certain goals and overachieving in others. Right now we are just taking life one day at a time and living true to what the doctors have said "we just have to wait and see". Everything seems to be waiting game when it comes to Bailey. Sometimes I think they just tell me that because in all honesty they have NO idea what to think about her. She's complex and her "symptoms" never make sense, simply put she's BAILEY! I'm okay with that but the little nagging unsettling pinch in my stomach every now and then isn't. We are having a rough time right now with behavioral/SI issues and what do you know here comes that little pinch rearing it's ugly head again. Is this deeper than what we all think it is? Who really knows? I've tried to teach myself in the last 2 years to stop thinking so much about what we DON'T know and to put my energy into what we DO know and work with that but sometimes it is just SO much easier said than done. I have truly been beyond emotionally exhausted in the last couple months BUT there WILL be better days and for that I am anxious and greatful!


As Bailey would say: "I love you TOO much"


I am a parent of a child with special needs. From the moment I met you, my sweet one, I knew I was forever changed. No matter how old you get I remember it all just like yesterday. Despite our hurdles and a world that wasn't made for you and me, we will find a way to thrive and overcome anything.