Just a little Bailee update, she's been sick again But is doing better. She has an MRI Tuesday and then a follow up with the neurosurgeon on the15th in Orlando. That's when we will find out if her chiari is stable for now or if she need more surgery.
Hi everyone! ITS SEPTEMBER!! Chiari malformation awareness month!!! We will be participating in the Tampa bay's conquer Chiari walk across America walk September 20th! Our team "Bailee's Journey" is collecting donations for conquer Chiari! All donations to this page will go to conquer Chiari from now till September 19th! Or you can support our team at conquerchiari.org thanks everyone!!
Bailee will be finishing physical therapy in the next few weeks and she will be starting back to occupational therapy at the same time. She has been back to school for a week and is loving 1st grade! Her teachers are amazing and I know she will do great this year! We are working on getting her MRI scheduled for October as well as her follow up with the neurosurgeon. She has had some trouble with her Dysautonomia lately but we are learning how to prevent as well as deal with everything that comes up! Thank you everyone for all your continued support!
It's been a pretty good week, Bailee turned 6 and didn't have too many issues this week, tonight she had some chest discomforts and upset stomach but got sick and felt much better and seems to be sleeping comfortably now! She has Physical therapy tomorrow, we slacked off a little this week with so much going on, hopefully she does ok tomorrow!!
What a week! Since getting our additional diagnosis of dyautonimia, postural orthostatic tachycardia syndrome (I hope that's all spelled right!!) we have been in high gear making small changes to our everyday lives! But all is going pretty good! One day at a time!
Another session of physical therapy today! She did great! Very tired tonight so hopefully she will sleep well!!
So we went back to the neurologist today and she diagnosed Bailee with Dysautonomia / POTS
Treating her with night time meds and increasing her salt and water intake.
As a parent its the worst thing in the world to know there is something wrong with your child and no one will listen to you! From neurologists, to therapists and even friends and family. I was told for 3 years that there was nothing wrong with her and some even went as far as to say i was looking for something to be wrong with her! So now as i start getting Bailees stuff ready for another school year i have to say a HUGE thank you first to her teacher last year , Mrs. Shihadeh was such a blessing in keeping Bailee from falling behind and also writting letters i could bring to the neurologist letting them know what she was seeing in class and her concern for Bailee in school! That is what finally made them listen to me and give us the MRI that found her Chiari! How do you repay someone who essentially saved your child from more years of suffering?!
seccond i want to thank EVERYONE who has Donated to Bailees gofund account, prayed for Bailee and gave us advice or told us your stories and struggles with Chiari! Every single one of you have made this road a little easier! Our journey has just begun and i know its going to be a very long bumpy road but with such great people in our lives it really does make it a little easier! I know this year will bring some challenges but i know her teacher this year will be just as amazing and Bailee will do great!!!
Praying Bailee sleeps better tonight! Lastnight she was up a lot with pains all around her head :-(
Her and mommy need some sleep!!
Her hair is growing back great!!
Long day today, Bailee was a bit fatigued and tired for some reason today but tomorow is always another day :-)
I want to start by saying all of you who have followed, supported and prayed for Bailee and our family are so dear to us and we appretiate all of you so very very much! With out all the support we have gotten Bailee would not have been able to have her surgery! She is just over 3 weeks post op and doing pretty good! she still has some symtoms and a few new ones as well but the surgeon is hoping that will all start to get better soon! She will be starting physical therapy in a week or so and possibly occupational therapy a few weeks after that! We have increased our Goal, we were not expecting the amount of medical bills that we are currently recieving, and Bailee is going to need another MRI and surgeon follow up in three months! we are being told the tough part of Chiari is you never know when another issue will arrise and another procedure will need done! I pray no one feels as if we are trying to take advantage or being greedy as we are trulty not trying to do either! And we hope that one day we will be able to pay this all forward 10 fold for others who need help!! All donated money is going straight to Bailees medical bills and needs only!! thank you everyone for all your love, support, prayers and forwards!!
Heading to our follow up visit with Dr. Trumble!! Praying for good news and hopefully they have made some headway to figuring out if we are Ganna have to pay the almost $25,000 insurance isn't covering or if it was a mistake!! *fingers crossed*
Good evening everyone! Bailee is doing a little better everyday! Her hand is getting better and her words are coming back! We are trying to get her into physical therapy to help with her range of motion!! So far all is well! Thank you again for all your support and prayers! I would like to humbly ask all our prayer supporters for continued prayer for our family as we struggle financial to catch up after her surgery and for her contined progress! We understand she has been truly blessed to so far have had no complications and we know that's in fact gods work! Thank you all for everything!
Thank you for all the prayers love and support, Bailee is home now recovering and resting! She has some tingling in her hand as well as trouble saying a few words and her dexterity is off but that should all clear up in a couple weeks!!
Bailee's surgery went great and she's continuing to be such a trooper!! They are keeping her on lots of meds today so she can rest and hopefully later today we can get her to try to eat something! Thank you everyone for all your love and support
Well we are all packed and almost ready to go! We will leave Monday morning to go over for surgery on Tuesday!
Bailee's surgery is in one week, and we want to take a minute to thank everyone again for all your help getting this far! The cost of everything is truley adding up even higher then we thought but all your help has really made a difference! Thank you sooo much!!
Only 12 days left until Bailee's surgery! Nerves are setting in for us as well as for our Bailee! It's hard when your dealing with such an observant, intuitive and inteligent child! We tell her everything because we feel keeping things from her would do more harm then good and she likes to know but there is only so gentle you can make this surgery sound, so of course she is nervous but she tells me all the time, "don't worry mom I'm very strong and super brave!!" She has no clue how strong or brave she truley is!!
There are no words.... Just tears to express how greatful my family and I are to have so many wonderful people touch our lives like you all have! In just over 6 weeks you all have made the impossible possible and we have reached our goal of $5000!! We know this will probably not cover everything but it will make sure the surgery is covered and take a huge amount of stress off of us!! From the very bottom of our hearts we would like to say thank you so very very very much!!!!!!
So we finally have a surgery date! June 10th is the big day!! We are so excited to finally have a date! We are going to Orlando and will be there about 6 days. We have to be there the 9th for pre op and then she will check in on the 10th for her surgery! We are hoping to stay at the Ronald Mcdonald house but as space is limited we are going to plan for the more expensive senerio and then hope for the cheaper! Because of the cost of EVERYTHING in orlando the cost of senerio B is not pretty!! We want to thank EVERYONE for all the support we have already gotten!!
Our apt in Orlando is this Wednesday! So excited to be able to get two apts done in one trip, saves us about $200. Thank you everyone for all the love and support! You all are amazing!
Thank you all of our new and continued supporters! I'm so humbled over all the love and support, I continue to get emails from so many wanting to give their personal stories and from them I'm learning so much! This is a totally new road but it's not so scary when you have such an amazing support system! Ours grows everyday!!! Thanks you!!
I want to thank everyone who has donated cash or check directly to us to help with Bailee's coming medical needs, I have totaled it and added it to the donation page as an offline donation in the amount of $507 from friends and family! All your support is truley appreciated.
I would also like to ask anyone with any suggestions about things that will help Bailee's recovery easier on her or me lol to please let me know! Thank you EVERYONE, for all your continued support!!
So I want to thank Nick and his crew at Alphas Pizzeria for being so awesome!! Not only did they make a very generous donation but they have become part of our family!!
Woo hoo Bailee has a neurosurgeon appt, may 14th, ( 2nd opinion consult) its a couple hours away but well worth the drive! thank you all for your love and support!
My family has truly been blessed with the very best most amazing people! A lot of you we have never met and others we have known for a long time, but I want to let you know that you are all very special people and we appreciate everything you have all done!! As surgery gets closer and closer not only are we seeing just how financially taxing this all is going to be but more so how emotionally taxing and that's where all of you have made an even bigger difference! Simply knowing we are not alone and so many also care for the well being of our Bailee means more then I could ever put into words!! Thank you everyone for all you love and support!!
With Easter this weekend i may not get a chance to get on here and leave an update, so i would like to say once again thank you everyone!! You have all been so unbelievably amazing!! The next few days are ganna be filled with decoration making, cooking making, egg coloring and finally easter bunnies, egg hunts and a nice family dinner! I hope everyone has a fantastic holiday!!
Easter is said to represent "new begginings" thats what we hope this surgery will be for our Bailee!!!
Everyday im more shocked and amazed by all these people who have come into our lives! Some good news is we finally have an insurance that our choice surgeon takes so fingers crossed we will have an apt soon! Thank you for all your support!!
Here is a link to Bailees facebook page! Bailee's Journey is a page to help keep everyone up to date on how bailee is doing as well as share storys and insite into Chiari Malformation! As we are at the begining of what sounds like a very long jouney i know many others have some miles on us in their jouneys and we would love tag along! Support and understanding can go along way! Thank you everyone and please feel free to follow along on Bailees page! Have a great night!
Feeling so overwhelmed with joy today by everyone's generosity, thoughts, prayers, insite and advise! I have spoken with so many from all over! I will be starting a Facebook page to help everyone follow Bailee's journey, I think everyone who has supported us in any manner should be able to follow and see where their support has gone and what it's done!! I will post a link as soon as it's up!! Thank you again everyone!
Thank you everyone who continues to follow Bailee and her journey with Chiari. Shes doing pretty good so far this weekend, no headache today so that always makes for a wounderful day!! we should find out about her insurance this week (fingers crossed) soon as we know what direction we are going with that we can get her apt set up with her neurosurgeon and get the ball moving a little faster!! Thank you all Very much and have a wonderful weekend!!!
I want so send a special thank you out to all of the supporters who i have recieved emails from saying " im sorry i cant donate....." but then something amazing happens, they continue on with their personal story and struggles of chiari and they tell Bailee how strong and brave she is and that they will pray for her, and that its all going to be ok!
i want to say thank you because as we appeciate the donations and they will help tremendously, but some of the simple messages left for Bailee have touched our hearts and have made her feel a little better about all of this! I read every message to her and it puts a tear in my eye and a smile on my face when she says, "they really care about me too mommy dont they!" and i tell her yes they do baby, they are very special people! So thank you because donations are not all about money some are about a message to a little girl that people care about her and what shes going thru! So please do not apologize if your donation is simply a message because we truley do need them too!!
Thank you to everyone for all your support you have all been beyond amazing!!
There are no words that could ever really say what our hearts are saying tonight! Thank you just seems too small to hold up just how greatful my family is! We have had so many wonderful people donate, comment, message, reach out and share! not only are we getting some much needed money assistance but the encouraging words and personal storys are far beyond what i ever expected! I feel like we have begun a new family of chiari support and i dont know what i would do with out them! Thank you EVERYONE who is on this journey with us! You are more appreciated then you will ever know! I dont know how i will ever be able to pay all this generocity forward but i promise all of you if it takes the reast of my life we will pay this forward!!!
I have had a few people ask me and others who have shared this page "how do we know the money will go only to Bailee"
So i wanted to let everyone know that all the money donated is going only to Bailees surgery and recovery and anythind she needs to get better!
If any (and by the looks of our upcoming cost there wont be much), but if we have money left over we are participating in the CCWAA its a walk to benifit and bring awarness to chiari in september and we would like to use any money left to sponser a team! But that will only be if all Bailees needs and medical expenses are paid first! I have changed the name of the page to make it less confusing! Thank you everyone for all your kind support!
Oh how dealing with insurance companies is so much fun..... said no one EVER!!! Hopefully we get her insurance stuff all set up by the end of the week so we can get everything rolling a little faster! Bailee is doing good, we keep her up to date (as much as a 5 year old can possibly grasp) with all thats going on, and i have learned i want to live in a 5 year olds world!! life just seems easier there haha! she says its only money mom and i will be just fine! Shes been following all her messages and facebook posts and shares from people and she thinks shes really traveling facebook, she always wants to know ... where am i now mom, who did i visit today!! shes so funny!! Thank you everybody for everythind you mean the world to us!
So we really liked the Florida childrens hospital for kids today, cant wait to set up an official tour and see a little more! Going to start getting everything set up to get her an apt with one of the Neurosurgeons over there!
Thank you again to all who have given, shared and prayed, you all mean so much to our family and we are truley humbled to have such great family and friends! Bailee is an amazing little girl and as we may never be able to repay what has been given, our family is true believers in paying it forward and its our families promise to always pay it forward in any way we possibly can! Thank you all again VERY VERY much from the bottom of our hearts!
Good morning everybody! I want to first say thank for all the support, donations, shares and prayers they are all very very very much appreciated!!
Today we are going to Orlando to visit possible hospitals, and to check out the area! The surgeons over there seem VERY promising!
Bailee is 5, and she has just been diagnosed with Chiari Malformation type 1, She needs to have surgery in a few weeks! Anyone who knows Bailee says she has a light about her! She brightens any room she walks into and we want to get her the best possible care we can! We are looking to have her surgery done either out of town or possibly out of state, and we are hoping to raise money to help cover some of the costs that will go along with this! All money raised will go directly twards Bailees surgery needs and care, if there is any money raised that is not used it will be donated to the Conquer Chiari walk across america in september! Thank you everyone for all your love and support! Please share with friends and family!