2011 so far

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

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..

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

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.

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."

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! :)

"You just have to keep on breathing because tomorrow the sun will rise and who knows what the tide will bring"

Decided to update on Bailey since I haven't written lately.

She was un-able to have the G-Tube surgery done because her insurance denied it as not medically necessary to be admitted for the procedure. Children's won't do it as an outpatient service so they wrote the insurance company a letter and an appeal is in process, we should know something by the end of the month. Crossing my fingers it can be done in July because August is an extremely busy month of annual appointments and our trip to Florida.

We haven't been able to get an appointment with a Developmental Doctor concerning Bailey's behavioral issues until December. Everywhere in MD seems to be booked up or not accepting new patients. I'm trying Kennedy Krieger which I STRONGLY hope she can be seen there because they have amazing programs for behavioral and feeding issues. I'm awaiting a call back to see if they will accept her insurance and have available dates. Cross your fingers for us her fits are getting worse and more frequent. I don't know that I will make it to December sane if we can't get in before then.

We head back to Shriners next Friday to check out Bailey's feet and braces. So far I don't see an improvement which I'm not surprised, She can't wear her night time straps because they leave horrible sores since she is hyper sensitive. She is still continuing to walk on the side of her foot and it looks so painful as usual. Casting seems to be the next option but we'll see what is said.

Nothing else is coming up appointment wise.

She is still my goofy little girl. :)