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Monday, December 13, 2010

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!

Tuesday, November 9, 2010

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.

Wednesday, September 22, 2010

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.

Monday, August 9, 2010

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

Wednesday, June 30, 2010

"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! :)

Thursday, June 17, 2010

"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. :)

Wednesday, May 26, 2010

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!

Wednesday, May 12, 2010

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.

Monday, May 10, 2010

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?

Thursday, April 29, 2010

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."

Monday, April 12, 2010

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...

Friday, March 26, 2010

You find strength in your time of need.

Time for an update.

Monday March 22nd we went back to Shriner's to have Bailey's first cast removed and we ended up being shocked to find out her foot looked so good that a second cast was NOT needed! They fitted her for dual AFO's (daytime/night time) and adjusted her old one's to wear until we can pick up the new one's in about 4 to 5 weeks. Hopefully her foot will stay looking this good. She hasn't picked back up walking yet, her leg is sore but hopefully soon it will soon and she'll be back to her old self again.

It has been a month next week since Bailey's Gastro appointment and regretfully she has not gained a single pound, is still choking, and now is skipping meals since we have tried to change her diet around. Her doctor and I have been in contact through e-mail and Bailey must get the scope procedure and feeding tube for night time feeds since she has not made any significant progress in the last month. :( Bailey will be admitted to Children's National Medical Center April 5th for atleast 4 days to have both things done.

Please keep Bailey in your prayers as we get through this process.

Monday, March 15, 2010

Life is like a bowl of cherries.

Figured it was time for an update.

Bailey was seen at Shriner's Hospital on Friday March 5th. We originally thought we were going to get fitted for new braces but he took one look at her right foot and he was not happy at all. So Dr. vB decided to do serial casting on her right foot to try and correct her position in hopes of avoiding surgery. We go back the 22nd to get the 1st cast off and the 2nd put on. So far she has done really well with it. She was a little irritated the first day when she realized she couldnt walk around but she has since learned to stand and hobble around by herself.

Also, as I've said in previous posts, We've been patiently awaiting for Dr. Bamshad at Seattle Children's Hospital response. We recieved an e-mail from his assistant today stating that he believes Bailey does have Atypical Distal Arthrogryposis 2B. (i've never heard the 2B part and am currently awaiting a response on what he means by that) and that he doesn't feel making a trip out to see him would be of any help because her Genetics doctors here have done all the tests and evaluations that he would have suggested already. He did suggest she recieve another MRI in the future to monitor her brain development and here's the kicker... he wants us to consider enrolling Bailey in his research to identify specific gene alteration that could confirm the diagnosis of DA2B for for future children. I'm awaiting an e-mail of more information before I make that decision. I'm disappointed that we don't get to meet Dr. Bamshad at this time but I am thrilled to hear from one of the best Genetics doctors in the Country that Bailey's doctors have been doing everything possible from that stand point. :)

Thanks for reading, I will update when/if we recieve more information or other appointments.

Tuesday, March 2, 2010

Cookies, Ice Cream, & Calories... OH MY!

First off thanks for everyone who wished us luck and prayers for today's GI consult that I've been dreading for the last 2 weeks or so. It is very much appreciated!

I loved the GI doctor! She took notes, listened, asked questions, and didn't brush off my concerns.

We have 1 month for the following:

Choking wise - Start Prevacid incase it's reflux making her choke & Get an appointment with an ENT to make sure everything looks okay from that end. If there's no progress by then they are going to schedule an endoscopy/hp probe procedure and take it from there.

Weight gain/nutrition wise - We have to push a high calorie diet for the next month and if it hasn't helped what so ever she will have to have an NG tube put in for night time supplements.

The NG tube will be temporary as long as she makes progress, if not she will get a G tube put in. The procedure will require Bailey to be admitted at Children's Hospital for 3 days. She is at a 9% for her weight/height ratio and if she was any further down they'd be scheduling the tube to be put in now, instead she wants us to try all this out for a month and see where we stand after that.

So please continue positive thoughts, prayers, and crossed fingers while I try to fatten our baby girl up. :)

Monday, March 1, 2010

Hello, almost a year later....

Well I created this blog and then never wrote in it again... what good was that? haha
Thing's got crazy in life and I honestly forgot all about the blog so here I am, attempt number 2 at trying to re-cap the last year of Bailey's life for everyone.

Since April of last year Bailey has had several tests done but most importantly an MRI of her brain that may or may not change our lives now and in the future. The MRI showed an under-developed Corpus Collosum (the part of your brain that connects one side to the other). We don't know much about it but it COULD cause major developmental delays amongst other things in her future.

Bailey has made such tremendous progress with her hands and feet that her doctors are leaning towards the fact that she has another diagnosis on top of the Arthrogryposis that may be Neurological do to the MRI results, expressive language delay, and now feeding issues again 18 months later. They have NO answers for us at the moment as to what this diagnosis may be. It's frustrating and we often leave the hospital in tears but we are trying to patiently play the waiting game.

In July of 09' I had the privilege of going to the Convention in Philadelphia, PA. We met tons of families and gained alot of resourceful information on our trip. I'd like to say it eased my heart a little considering these people have become family to me over the last year and it was great to finally see faces and not just pictures over the computer. They make the hard days much easier to get through!

While we were in Philly we got to meet with Dr. Judith Hall and Geneticist who has researched Arthrogryposis for over 40 years and she is the reason Bailey's doctors are now leaning towards another diagnosis. She thinks Bailey is rare, possibly the rarest of the rare. She's never seen a child quite like her. We are in contact through e-mail and she is such a sweet and caring woman. I'm SO thankful I had the opportunity to meet her and take in all her knowledge. I'm so glad she has chosen to follow Bailey's progress and speak to her doctors.

We are currently waiting to see if Dr. Bamshad of Seattle Children's Hospital is interested in seeing Bailey and possibly giving us new answers to what is going on. He was mentored by Dr. Hall so we are afraid he may not have anymore answers than she did but we are hopeful and patiently waiting for him to make his decision.

Since last year Bailey has mastered crawling, it started off rocky but she got the hang of it. Still slow speed but she got around. Now at 18 months she has started walking with the help of Shriner's made AFO's and lot's of practice. She isn't a perfect walker and we still have lots of falls but she's WALKING. My god it's a miracle. :)

In the last month we have approached an old but new conflict. As you can read in the previous post when Bailey was born she would not eat without choking and turning blue. Overtime this got better and slowly went away at least that's what we thought. She has had a few small episodes over the last year but nothing I thought was too serious. All of a sudden in the last month she has started choking again but it is almost everyday, not always to the point of turning blue but still happening. It is VERY frightening and has turned into a very serious matter. Last week we got a repeated swallow study done since the last one was at only a few months of age. It didn't really show much except a little residue staying in her throat after swallowing but no aspiration into the lungs or anything. You would think I'd be ecstatic over that but I'm not that happy. Since there was nothing found that either means its neurological or low tone in her throat. We go tomorrow for a GI consult and hopefully they will have some answers other than a temporary feeding tube as we were told. Honestly we'll do anything to stop the choking. It's just such a risk that can't be taken lightly anymore.

We also have an EEG scheduled for Thursday to out-rule seizure activity from Bailey's "shutter attacks".

We're headed to Shriners on Friday to get fitted for new AFO's and to show Dr. vB that Bailey is now a walking girl and hopefully he'll have some suggestions to keep her from walking on the side of her right foot. Her PT's are afraid she may be causing damage to her ankle walking like that but we'll see what he has to say.

We have alot going on this month but we're trying to take thing's one day at time and one step at a time.

I will update next week after all of her appointments to let everyone know what's happened and where we stand.

Thanks for all your support and strength!

"Fall into me, my arms are open wide and you don't have to say a word cause I already see that it's hard and you're scared and you're tired and it hurts and I wanna be the one you reach for first."