"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. :)

When life throws you lemons make lemonade :)

As Bailey gets older I've been beginning to think every little bit of good news comes some bad news right behind it. It's all so bitter sweet.

Bailey had a speech/feeding evaluation on May 14th where they confirmed the fact that she has low muscle tone in her lips, cheeks, tongue, and possibly her throat. She needs to be taught how to chew properly, move her food side to side, control her tongue, and swallow ect. Basically she needs speech therapy on a moderate to severe level. She didn't do that bad on the speech portion, I was really happy with that. She scored just at a concern level with an 83. I knew all her talking this past month or so has paid off. :) We're on a waiting list for speech therapy at the hospital since she needs someone who is really proficient in feeding issues because that's the main issue but if infants and toddlers can come in in the mean time that would be helpful also.

We headed back to Shriners Monday for Bailey's brace check. Dr. vB adjusted her braces and we are having NO more horrible red areas or sores with the straps but he again didn't like how her foot looked. So we go back in a month and may start casting then depending on the looks of things instead of waiting til August. I really hate to see her be in a hot cast in the middle of summer but it is what it is.

Bailey has been recommended to start school in August! Did you hear me!? SCHOOL! 2 day's a week for 2 hours a day to help her transition into a school-like environment and be around other kids her age. We are SOOO excited for this and are awaiting more information! Probably the MOST awesome news we've gotten in awhile!

Saved the worst news of the month for last but most importantly not least. We followed up with Bailey's Neuro-muscular unexpectedly yesterday to address some major concerns in her change in behavior over the last 2 to 4 weeks. I don't want to go into detail all that goes on when Bailey throws these "fits" of anger but it is a child I do not know and very much so more severe then a simple terrible 2 tantrum. Her doctor referred us to a neuro-developmental doctor to address these issues as it may be something serious like autism, bi-polar, OCD, ADHD, ect. and that she may need help or medicine to control these fits so as she doesn't hurt herself. I was pretty devastated hearing that as if she doesn't have enough going on but just like everything else we will figure it out and deal accordingly. Unfortunately we will no longer be seeing her neuro-muscular doc anymore after August because he can no longer be of help to Bailey. I will really miss him, he is my favorite doctor of her's and I'm really sad he will no longer be apart of her team.

We are scheduled to have the G-tube put in next Wednesday but as of right now that date is on hold because of insurance issues. They always give us a really hard time with overnight stays. So hopefully we'll be able to get in and get it over with if not it will be happening soon regardless.

Other than that Bailey is goofy as can be, talking up a storm, and mocking everything in sight. She's getting really good at walking with her new AFO's and new shoes. I'm amazed as is everyone else as to how far she has come. She may have set backs here and there but her over-all progress is outstanding! She is the strongest person I have ever known and I am SO blessed to be her Mother!

Does it ever end?

Tuesday Bailey had a GI follow up appointment, she gained a little over a pound in a month which is good but unfortunately not good enough. Bailey's eating hasn't picked up enough for them to consider taking the tube out completely. Dr. Sehgal is afraid if they take the tube out or lower her feeds we will be in the same boat we were in again with weight gain and lack of calories. So they would like to place a G Tube for a more long term type of help. We have to get an x-ray of her stomach before we can get a date but it will within the next 2 to 4 weeks and she will be admitted to Children's for 2 days.

Her choking has continued and she has had more blue episodes, we've seen every team to address the issues except pulmonolgy. We have an appointment for May 24th to see the Pulmonologist that she saw after she was released from the NICU. I hope to god he can find us some answers because it is the scariest experience we've ever gone through and we are so afraid of a bad outcome. There has to be something SOMEONE can do.

We will be heading back to Shriners in 2 weeks instead of 3 months to check out her braces, they've been leaving sores and Dr. vB just wants to do a brace check to make sure everything is going okay.

This month is ridiculously busy but I am thankful for every single day that I wake up to my beautiful angel.

Peace, Love, & AMC.

Just wanted to update from our trip to Shriners last Thursday. We picked up Bailey's new braces(as seen to the left), which makes walking a bit easier for her. She's still walking on the side of her foot but with the braces it is much better. Dr. vB said with club feet it often re-occurs after correction (casting/bracing) and that a tendon transfer is sometimes necessary. He wants to try out the new braces with night time straps until August and if she is still walking on the side of her foot as much then he will try the Ponseti method(casting) again this time for 6 or more weeks and if after that it re-occurs again she will need a tendon transfer around age 3. As always we're hoping to not go that route!

We got to meet up with some AMC family while we were in Philly and as always it was amazing. Met 2 new family's and saw 2 family's we've already met again. I love those little get togethers. :)

We follow up with GI tomorrow about Bailey's feeding tube since it has been a little over a month since the tube was put in. She's eating a little more but still not enough and I know she's packed on some pounds with the feeds. :) So I'm interested to see her weight and the plan after this. G tube or no G tube?

Another turning point a fork stuck in the road..

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

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

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

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

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

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

Tough times don't last but tough people do.

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

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

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

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

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

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

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

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