Sweet Bailey Grace

Accomplishments!

2012-02-02T06:56:00.000-08:00

((*Updates*))

((Bailey's new hair cut! She donated 10 inches to Locks of Love))

Bailey finished serial casting on her right foot on January 20th! Her foot was very sensitive to the touch and very sensitive to bear weight on. After almost 2 weeks of being cast free she finally started to walk independently again. She is still a little unstable and her foot doesn't look so good to me but she is back to walking and soon she will be able to go on the school bus without her Cruiser.

Within the last week Bailey has given up her Ninny. Bailey has been very attached to her ninny her whole life. In the last year we only allowed her to have it at night time or if she was sick but at almost 3 1/2 years old it was time to get rid of it all together. The first night was very rough with alot of tears but it got easier every night after that!

We have also been working very hard at potty training her! She has done extremely well with only 1 or no accidents a day! She has been wearing pull ups to school and big girl underwear at home! We are trying to find ways for her to pull her pants up herself, she can get them down but her hand strength just doesn't allow her to pull them back up!

In the last 5 months since Bailey has been in pre-school she mastered drinking from an open cup! So now as long as we are home she drinks from an open cup that's half full and she doesn't spill or gulp!

We are so very proud of all of her accomplishments! She is making lots of progress in a small time frame!

Up coming things:

- We are still awaiting Bailey's muscle biopsy to be scheduled!

- We have Bailey's 2nd parent/teacher conference and IEP meeting to discuss her getting services over summer!

- She has a GI appointment this month because her feeds will officially be over after slowly weaning her since her hospital stay in August! Hopefully she will not go into metabolic crisis!

- I am still trying to get Bailey outpatient Physical & Occupational therapy! She receives therapy at school but it is just not enough!

International Day of Acceptance

2012-01-19T07:06:00.000-08:00

January 20th, 2012, is the 3rd annual “International Day of Acceptance.” This day of celebration and advocacy was created by the people at 3E Love in order to celebrate who we are as disabled citizens. Disability pride awareness focuses on the abilities, not disabilities, of each person.

And the results are in...

2011-12-27T13:07:00.000-08:00

I recieved the results of Bailey's scans today. The scans were a brain MRS and a whole body muscle MRI. They also checked her marrow and they took blood to send for research/further testing. She stayed overnight at the hospital the night before her scans as a precaution. She is not allowed to fast so they thought it would be best if she stayed on IV fluids and had glucose checks throughout the night. The scans took 3 1/2 hours under sedation and she was able to go home a few hours after they were done and she ate/came down off of the meds.

The brain MRS portion of the scans were normal, this does NOT rule out a Mitochondrial disease but it also doesn't show a huge red flag for one!

The whole body muscle MRI showed overall decreased muscle bulk(muscle weakness) and fatty atrophy(loss of muscle tissue) of her forearms, thighs, calves, and 9 individual muscles in her legs and feet.

Her marrow was within normal limits which is good.

They said this does not give them specific answers but it does appear that whatever happened to Bailey's muscles happened during fetal development and it does not appear to be progressive(it won't get worse) which is good news. The other good news is they were able to identify the right muscle to biopsy to get the best result for more SPECIFIC testing of the muscle.

So, although we still don't have answers so to speak nor does this help determine why some of the other things happen to her it was the first step to testing and now we know of all the muscle damage. I don't know at this time what muscle they have chosen to biopsy nor do I know when the biopsy will be. I will update when I know more!

News..

2011-12-10T14:45:00.001-08:00

So 2 days before Bailey's Shriners appointment I had a dream about Bailey coming home in a cast.. Must be Mother's intuition because I'll be damned if that's not what happened! I guess I should start questioning my dreams. haha.

Dr. vB said Bailey's right foot isn't looking very good, it has definitely regressed and the bone is starting to poke out of the side of her foot. He talked again about doing a tendon transfer but he'd like to wait until after she turns 4. So in the meantime he wants to try serial casting again, long leg casts for a few weeks then to a short leg cast for a few more weeks. He will then put her in a UCBL brace during the day which is a brace just for the bottom of her foot and for at night she'll have an AFO(like she has now) with straps. The good news is we are going to try to do away with a brace for her left foot ALL together since it's looked good for over a year now! So for now we will be traveling to Philly every 1-2 weeks for cast changes. Our next appointment is December 19th.

Not really sure what we are going to do about school while Bailey is in a cast, I have to have a meeting with her teacher to figure out the best way to go about this! I'm thinking if I get her new stroller which is an adaptive stroller that acts as a wheelchair and can be used to transport her on and off the bus that there should be no problem. Once she's in a walking cast she should be fine without it!

Wednesday is the BIG day! Bailey gets her Brain MRS & whole body muscle MRI. I am so nervous for various different reasons but it is finally here and I'm ready to get it over with and have some results.

That's all folks.

Mitochondrial Disease

2011-10-26T09:40:00.000-07:00

What is Mitochondrial Disease

Mitochondrial diseases result from failures of the mitochondria, specialized compartments present in every cell of the body except red blood cells. Mitochondria are responsible for creating more than 90% of the energy needed by the body to sustain life and support growth. When they fail, less and less energy is generated within the cell. Cell injury and even cell death follow. If this process is repeated throughout the body, whole systems begin to fail, and the life of the person in whom this is happening is severely compromised. The disease primarily affects children, but adult onset is becoming more and more common.

Diseases of the mitochondria appear to cause the most damage to cells of the brain, heart, liver, skeletal muscles, kidney and the endocrine and respiratory systems.

Depending on which cells are affected, symptoms may include loss of motor control, muscle weakness and pain, gastro-intestinal disorders and swallowing difficulties, poor growth, cardiac disease, liver disease, diabetes, respiratory complications, seizures, visual/hearing problems, lactic acidosis, developmental delays and susceptibility to infection

Just spoke to Bailey's new Genetic/Metabolic doctor. She had some blood work done a few weeks ago when she was sick and it still showed that her organic acid was high. This is common in people with Mitochondrial diseases. They talked about it before but were un-sure and now this is pointing them in the direction that she does have a Mitochondrial disease. She needs to have the whole body muscle MRI & a Brain MRS done to confirm and to look at her lactic acid. She then needs a muscle biopsy as well. We have all of this already in the works of course, but her insurance has denied the scans because they are taking bone marrow blood supply. This is commonly taken from people who have cancer so they are having a hard time finding it medically necessary, which indeed it is. They have started the appeal process, so it will be put off a little longer but I know they will eventually agree to covering it with the right wording and explanation.

Are we really getting closer to an answer??? Although this is not good news it is nice to possibly see a future answer to all of the things that have been happening to her, her whole life and to getting her on the right treatment path. Pray that her insurance agrees to these scans soon!

October 15th; My Angel Baby

2011-10-12T15:59:00.001-07:00

This post is pretty un-related to Bailey but just spreading the word of a day near and dear to my heart! I thought I'd share my story and reasoning why October 15th means so much to me.

Steven & I found out we were pregnant the very first time at the end of March or early April 2007, it was very un-expected and a huge change in our still fresh relationship but we embraced our blessing. Things seemed to go okay throughout the beginning of my pregnancy. I counted down the days, went to the doctors, and we got our very first (and only) sonogram. I did endure several stressors, we moved into an apartment and I started a new job full time. On my very first day of work in June 2007, middle of my shift I started to feel sick and my stomach was in unbearable pain. I tried to stick it out but I started to bleed so I left work early and went straight for the hospital in fear that something was just not right. After hours of sitting at Howard County General and getting an ultrasound they broke the most heartbreaking news... I had lost my very first baby, 15 weeks into my pregnancy. I remember not being able to breathe. They were un-able to tell me if the baby was a boy or a girl so his/her name has just always been "Baby Breeden". They were also un-able to tell me why I lost the baby other than the fact that the baby had something medically wrong so he/she couldn't survive. I had surgery(DNC)the next day to remove the baby, it was one of the hardest things I've ever had to go through. This was the first REAL hardship Steven & I endured together! 6 short months later we found out we were pregnant yet again and 8 months later we were blessed with our beautiful Bailey Grace.

(The only sonogram we had done, one month before the baby passed away)

**Pregnancy & Infant loss Remembrance day is this Saturday, October 15th, please join me in lighting a candle from 7-8pm to remember all of the angel babies who were just too beautiful for earth!

"When a child loses his parent, they are called an orphan. When a spouse loses her or his partner, they are called a widow or widower. When parents lose their child, there isn't a word to describe them."

Fall is here!

2011-09-29T09:21:00.000-07:00

It's been awhile since I've posted anything..

Bailey turned 3 on August 21st, she had a Tinkerbell party at Clark's Farm. The kids got their faces painted, got to feed and pet all the animals, went on a hay ride, cow train ride, had pizza, cupcakes, and of course presents. Bailey had fun although it was pretty hot that day and she got worn out fast. Next year we'll try for cooler activities!

August 26th we met with a new Genetics doctor that her original Genetics doctor referred us to for an after hospital follow up. He didn't have much to say because all of the blood work that was done in the hospital that could have given him some answers were either incomplete or done too late after her initial symptoms. So he gave me a prescription to carry around that lists blood work to be done in case that ever happens again it will be done correctly and right away! He also agreed to no fasting for tests anymore and he wants us to record a food diary so a Nutritionist can go over it and see if maybe Bailey's missing or getting to much of something that would cause her to have a reaction if it's taken away. He was very nice but again we left with no answers!

We've been slowly decreasing her overnight feeds since she got out of the hospital and she has been tolerating that just fine. I'm not afraid of doing it slowly, I'm afraid of once it's done and gone completely.

NIH & Children's are still working together to coordinate her really important MRI's! I recently contacted the assistant and it shouldn't be too much longer before we have a date of when they'll be. I'm nervous for what they may or may not find but maybe it will push us in some sort of direction and it will determine which muscle they can do a muscle biopsy from!

Bailey started pre-school at the beginning of the month and she absolutely LOVES it! She wakes up everyday asking to get on the bus and go to school and she comes home everyday telling me all about what she did! I'm still getting used to not being as involved and trying to learn the school system and how Bailey's IEP goals are being met. I finally am communicating with her new therapists and I'm feeling better about it than I was at the beginning. I do believe she will need PT outside of school as well though.

I will update again whenever I have more news. :)

Bailey's last visits with a few of her therapists that have seen her since she was 1 week old

Video I made for Bailey

2011-08-16T10:20:00.001-07:00

Things just got a little bit more crazy

2011-08-08T17:58:00.000-07:00

As most of you know Bailey was hospitalized from Tuesday evening until Saturday afternoon for what they are calling a Metabolic Crisis...

Glossary - Metabolic crisis

This is a serious health condition caused by low blood sugar and the build-up of toxic substances in the blood. Symptoms of a metabolic crisis are poor appetite, nausea, vomiting, diarrhea, extreme sleepiness, irritable mood and behavior changes. If not treated, breathing problems, seizures, coma, and sometimes even death can occur.

Metabolic crises happen more often in people with certain metabolic disorders (some fatty acid oxidation disorders, amino acid disorders, and organic acid disorders). They are often triggered by things like illness or infection, going without food for a long time, and, in some cases, heavy exercise.

Last Friday we had what we thought was a great GI appointment. They felt she had gained enough weight to try and stop feeds. Great news right? I was a little apprehensive because the last 2 times we tried to stop feeds Bailey became dehydrated and we had to start them back up again. Her GI team assured me she would be fine as long as I made sure she drank alot and continued to give her extra calories by mouth. Bailey did really well until Tuesday morning.

She woke up Tuesday feeling terrible and then started vomiting, she continued to decline all day even after taking her to her Pediatrician. By the time I took her to the ER she was lethargic, wasn't talking, and hadn't peed all day. All I can say is THANK GOD we decided to go to the ER, I don't even want to think about what could have happened. Her Glucose(blood sugar) was dangerously low and her white blood count was almost triple! It took them 2 days to restore her fluids and her blood/urine tests showed signs that her body had started to shut down!

They say this is NOT because of her feeds and the last 2 times probably weren't either, they simply aren't enough to cause that much of an issue. A bunch of Specialists including her Genetics doctor and students joined forces with Bailey's NIH doctor and tried to come up with a reason her feeds have been masking something to where she can't be without them. Of course we have NO answer and they all believe it is due to Bailey's famous underlying issue that NO ONE can figure out. So now instead of just trying to find an underlying issue like the last few years we now have a critical issue to deal with. She is going to be closely observed and we have to be so careful of her getting sick because sick could throw her into another metabolic crisis and she can also no longer fast before tests (she has several coming up) because that may cause dehydration which could again throw her into a metabolic crisis. We are waiting for her follow up appointment with Genetics to hear the full plan and discuss the future while we await possible answers. It's a strong possibility that I will get Glucometer to test her sugar when/if she starts acting funny so I can act accordingly based on what it says but for now she has a fluid intake amount she has to reach each day and they restarted her feeds and we will try to wean her very slowly(1ml a week) and see what happens.

Out of everything Bailey has been through in her little life this was by far the most horrible thing I have ever had to watch. At one point they couldn't wake her up, the thought of losing her became present and it was the worst feeling I've ever felt. I've never been more terrified in all of my life. I hope to God that this never EVER happens again.

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

2011-07-14T12:55:00.000-07:00

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!

2011-06-19T11:55:00.000-07:00

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

2011-06-15T17:46:00.000-07:00

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

2011-06-14T12:04:00.001-07:00

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

2011-06-02T15:12:00.000-07:00

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"

2011-05-16T18:26:00.000-07:00

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!

2011-04-25T18:19:00.000-07:00

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...

2011-03-31T18:03:00.000-07:00

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?

2011-03-02T11:58:00.000-08:00

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

2011-02-21T18:38:00.000-08:00

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.

2011 so far

2011-01-19T11:43:00.000-08:00

I realized today that I hadn't written since before Christmas. I'm such a bad "blogger"! A few things have happened since my last post, those of you who follow me on Facebook probably already know what's going on in Bailey's life but for those of you who don't or simply missed out on what was said I'm going to back track from my last post to today!

Christmas came and went faster than the anticipation seemed to last. Bailey made out like a bandit and fully embraced Christmas this year. It was so much fun watching her open her presents and the expressions on her face were images I will never forget!

Bailey got her Mic-Key button on Dec. 20Th and we absolutely love it! It is so much easier than the G-Tube! They decided to hold off on lowering her feed anymore until April because she had lost 1/2 a pound since the decrease and didn't feel comfortable going down in such a short amount of time. Bailey was eating really well for a few weeks and now she is back to hardly eating and throwing huge "fits" when it's time to sit at the table. I'm not really sure what it's all about but hopefully it will resolve it's self and she doesn't lose any weight in the process.

We met with the Developmental Pediatrician on December 22nd and he came to the conclusion that all of Bailey's behavior issues points to Sensory Integrated Dysfunction (SI). I of course had never heard of this before but with the help of some of our AMC Mom's and the internet I have a small idea of what is going on. I'm still researching and reading up on the issue so don't ask me for the low-down on it just yet. We were told to get Bailey's OT involved and to try and find a Psychiatrist. I'm up in the air about seeing a Psychiatrist because I do not want Bailey to simply be medicated to eliminate the "fits". I want help on working through them. Bailey's OT was very hesitant on the subject at first but she did bring up Bailey at their weekly meeting and they decided that Bailey having a Routine Based Interview(RBI) would be a good start to trying to figure out the problem. An RBI goes through a whole day of Bailey's life, detail for detail, how we all react and handle her "fits" etc etc. Should be interesting to see what comes of the interview. This is all a work in progress and so very new to us so we are still trying to figure it all out and make the right decisions for Bailey.

Took Bailey to the eye doctor on the 3rd because I kept seeing her cross her eye's, they are still saying it's the shape of her eye's. There is a name for it but I can not remember it right this moment. It is nothing to be concerned about and she doesn't need to go back unless it doesn't gradually clear up as she gets older.

The same day as her appointment she had her normal Monday afternoon Speech therapy session BUT this one was much different than all the rest. Dr. Stuart informed us that Bailey no longer needs speech therapy!! Her speech is right at age level if not a little advanced and she is doing wonderful! She did suggest her be re-evaluated on an as needed basis and told me of some things to watch out for and that if they don't clear up on her own in the next few years she will need speech therapy again! I was so ecstatic, it's nice to see hard work pay off especially when it comes to your child!

Bailey doesn't have too much coming up as far as appointments goes just lot's of preparation for transitioning to an IEP, getting her SI issues under control, and normal therapy that has decreased some what. I will be in touch after the RBI to update on how that went!

Sorry for the lengthy post!

"I am a parent of a child with special needs. When times get tough I remember that I have enough love and hope to get us through anything that was or ever will be."

It's beginning to look alot like Christmas

2010-12-13T17:50:00.000-08:00

Hey guys!! I can't believe it's December and Christmas is less than 2 weeks away already. I'm completely UN-prepared this year, comparatively speaking! Bailey is more than ready though! She is fascinated by all the lights, the tree's, and most of all Santa! She has informed us all that Santa Claus will be bringing her a big baby doll for Christmas... I guess I should get on that! :)

She is talking up a storm these days.. saying 4 and 5 word sentences, completely blowing us all away. You would never know she didn't say hardly a word such a short time ago. I could listen to her talk all day she has the sweetest voice!

We picked up her new braces last week at Shriners and they are awesome! I love the hinges and so does Bailey. She moves her ankle up and down and says "new braces"! She's still getting used to them but hopefully they will help more with stair climbing and stuff like that which are things we are working on. Dr vB is still talking about doing a tendon transfer in "about a year" so until then nothing new and we'll be headed back there in March some time for a check up.

She had an appointment last month with GI and she had an amazing weight gain so they cut back her feed a little bit and said she is doing so good!! We met with a nurse that I wish we would have met at the beginning because she made me feel so good about everything and that everything is going to be okay. We are still actively working on getting good lip closure and better mouth strength which will hopefully come along with a better appetite! She goes back to GI next week to get her Mic-Key button and if her weight is still good they should decrease her feed a little more. I'm ecstatic about it and we are still reaching for our goal to eventually be off the tube but SAFELY of course!!

Bailey's big appointment with the Developmental pediatrician is also next week, we have been waiting for almost a year for this appointment and I am SO nervous that it isn't funny! I can't wait to get all of this stuff off my chest about her behavioral issues and I am hoping and praying that he can help us find the answers to all this frustration.

After the 1st of the year we will be starting the meetings for Bailey's transition from an IFSP to an IEP so that she can go to school next year. I can't believe this time has come so fast. Seems like yesterday we were just getting started with the Infants & Toddlers program and I didn't even have a clue what an IFSP was and most importantly I can't believe my little baby will be 3 in less than a year. She is growing up way too fast for my liking.

As 2010 is coming to an end I want to thank EVERYONE who has been there for Bailey and our family over the last year. It means so much to us that we have such amazing people in our lives to share this journey with. I can never express enough how much all of your love means to us, I can only give the same back x a million! I love you all unconditionally!

Happy Holidays!

Fall into me..

2010-11-09T13:20:00.000-08:00

Thing's are as always hectic but steadily progressing in our house..

Bailey's G-Tube site is healing nicely and she is able to get her Mickey Button December 19th. Woo-Hoo! No more long annoying tube. She is still not eating "good" but she has days that are better than others and she is actively working on strengthening her muscles through speech therapy and home exercises. She has gained 5lbs since she was put on the NG Tube back in April that is WONDERFUL. My little girl is weighing in at 27lbs!! Although we know as of right now she is very dependent on at least half her calories through the tube it is promising that in the future we may be able to try again more cautiously to get her off of it.

We made our way to Philly yesterday 11/8 to see our wonderful Orthopaedics doctor. It's time for new braces so Bailey was fitted for those and we are keeping an eye on that crazy right leg. It's been acting up and causing a limp most mornings. Not sure what the cause is as of right now because her hip displaysia is not severe enough at her age to be causing that drastic of a problem. We go back Dec. 6th to pick up her stylish leopard print braces WITH HINGES!!! :)

Other than never ending appointments and therapy Bailey has continued to go to school twice a week and she is still completely in love with it. She comes home singing and so proud of herself. We couldn't have made a better decision than to put her in the Tots Discovery Program.

This Halloween Bailey was Tinkerbell and she got to get the full experience this year as last year she was still not walking and needed carried up to peoples doors to get candy. This year you could really see her independence shining through. She knocked on every door and said "TRICK-OR-TREAT, HAPPY WEEN!" It was a completely awesome sight to see. I love watching those little moments that may be ordinary in childhood but they are extra-ordinary to our family because Bailey works so hard to accomplish these everyday things and it makes them that much more special.

As the Holiday Season is vastly approaching I can tell it is going to be an exciting time of year (as if it isn't any other year) Bailey is starting to understand Christmas and is already completely fascinated with everything Christmas related. I am SO excited to start the Christmas experience with her as I did when I was little.

Although things sometimes spiral out of control and I'm not able to keep up with this thing as often as I'd like or I'm not able to talk to all of our AMC family on a daily basis I am still thinking of you all everyday and so very thankful you are all apart of our lives.

One huge busy mess

2010-09-22T12:41:00.000-07:00

I have been un-able to update everyone on this last month of events because our lives have been far to busy to stay logged onto the computer long enough to type anything more than a sentence.

So here it goes...

Bailey saw her Neuro-muscular doctor for the last time August 19th. He is moving away and we think retiring. We were very sad to say good-bye because he has seen Bailey since birth and has done amazing things for her. We will have a new neuro-muscular doctor and we will still be seen in the MDA clinic at Childrens even though Bailey does not have MD.

As most of you know my beautiful little girl is not so little anymore and she turned 2 years old on August 21st. We had an awesome Dora birthday party/cook out and she had a blast. It was nice to see all of our family and friends.

We made a trip to Shriners at the end of August for a brace check and follow up. Dr. vB informed us that the muscle on the right side of Baileys right foot is not working and she will indeed need a tendon transfer around age 3 or 4. It was discussed before but never a definite. So for now we'll stay in the AFO's (she should be getting new one's soon) and keep trying to build up her strength.

On September 14th a day before scheduled G-Tube surgery Bailey woke up very sick and lethargic. We had tried to decrease her feeds over the previous 3 weeks to see how dependent she was on the calories that she was getting through her feeding tube. Evidentally over that 3 weeks she slowly but surely became very dehydrated and ill. On that morning it caught up with her and she was admitted into Childrens and recieved 3 bolus IV fluids to get her heart rate and blood pressure down and she recieved fluids overnight as well so that she would be well enough for surgery the next day. It was a very scary expierence.

She was able to have surgery, she had several complications after but was much better once we were able to get her home. She is doing well with the G-tube or her "Boo-Boo" as she would said. They upped her feeds because of her getting so sick so her oral intake has shown a dramatic decrease. We are still awaiting REM so we can get her into a feeding program at Kennedy Krieger in Baltimore since Children's won't hook us up with their feeding team.

On Tuesday Sept. 21st Bailey stared a Pre-School based program through Howard County called Tots Discovery. She will go Tuesdays & Thursdays for 2 hours and she will have a companion to help her out. She absolutely LOVED her first day! My little Miss Independent didn't care that I was leaving her at all she actually waved me goodbye and went about her business and was highly upset when it was time to go home. I know this will be a wonderful expierence for her to be around other children her age some disabled and some who are not.

That pretty much sums up the important things over the last month but she does have several post-op follow up appointments coming up and her annual review for Infants & Toddler. I'm interested to see what her "scores" are. I know I will be more than proud of the progress she has made over the last year.

I'm here, I'm here.

2010-08-09T19:32:00.001-07:00

I haven't written a post in over a month! Thing's have been rather crazy around here but I will have tons of updates this month since Bailey has a million and one follow ups because her birthday is next weekend. Yes my little miracle is going to be TWO and I can't believe it!

We just got back from Disney World and the AMCSI 5th Annual Convention! We had more than an amazing time. Saw alot of familiar faces and met a bunch of new ones too. It's amazing how in just a years time our AMC family has grown so much. I was blown away at how many people were there this year. The group picture was enough to make me cry alone. I am SO greatful for this group, they have been there through some of the hardest points in Bailey's life (so far) and pulled us right through if not only with kind words but love and advice also. I could say a million thank you's but they would never amount to what I feel for them all in my heart! Hopefully we will be able to attend next years convention in Kansas City!

We met with Bailey's Genetics doctor yesterday and she didn't have too much to say just that she had heard from Dr. Bamshad's office in Seattle and she strongly suggested we sign Bailey up for his research program. She also was worried about how Bailey compensated for her right leg/foot. She's been putting most of her weight on her left side and it's starting to affect her posture and her shoulders are now un-even so she wants me to bring it to Dr. vB's attention when we head to Philly on the 27th.

Also in the past several day's Bailey's whole right leg has been turning in we aren't sure if it is because she did so much walking in Disney World or if it is simply her hip dysplasia showing it's self. It's horrible though, she can't walk without stumbling and it has me worried. It's this way with or without her braces on. I've written an e-mail to Dr. vB and again we see him in 2 weeks. Hopefully it's nothing toooo serious right now.

I hope everyone is having a wonderful summer!

"All our dreams can come true, if we have the courage to pursue them." - Walt Disney

"When the power of love overcomes the love of power - the world will know peace."

2010-06-30T15:53:00.000-07:00

First off I have to say I was completely blown away with love and support today. Today was the first annual Arthrogryposis Awareness Day, everyone was asked to wear blue to show support! For the last couple days I have logged on to see nothing but blue support on my Facebook page. People took pictures of themselves and their families wearing blue just for AMC and some just for Bailey! It brought tears to my eye's knowing that even though we sometimes feel alone in our journey we are far from it. Love is a beautiful thing in all essence of the word!

Only updates I really have are that Bailey was seen at Shriners on Friday 6/25 about her foot and to get her hips re-xrayed.

I was so nervous before this appointment and I couldn't for the life of me figure out why, we've had a dozen appointments more important than this specific one but for some reason I was really un-easy for days before this appointment.

Come to find out I was un-easy because there was something wrong, nothing to drastically worry about at this moment but still significant. Dr. vB confirmed that Bailey has hip dysplasia but is HOPEFUL that they are starting to come down by the looks of the xray. So they are going to keep a close eye on it and as long as nothing changes between now and next year they will just xray around her 3rd birthday and then talk about options of what to do if things have not changed. He was also concerned that Bailey is still semi bow legged and she is almost 2. He thought that may be contributing to her right foot issues. They changed her AFO's all up, added tons of new pads and built up the bottoms on the outer side of the foot on each one. She hasn't had them long enough yet for me to say what I feel about them but she does seem to be keeping her foot flat so far!! Hopefully they help and we don't have to go back for 2 to 3 months! :)

There are no more important appointments until August, thank goodness!

I will update in July on how thing's are going with her AFO's and if she starts doing any new thing's. She never ceases to amaze me, her vocabulary is getting bigger by the day. She is one smart cookie! :)