Kylee's Support & Love Page-A Gift From Above

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Kylee's Support & Love Page-A Gift From Above

Our journey with our sweet angel Kylee Christine and her diagnosis of Joubert Syndrome.We are asking for all the prayer and support of our family & friends Ugh!

Our journey began almost a year ago with our sweet angel. We had no idea that even though Kylee wasn't hitting all of her milestones growing up, that it was something we had to worry about to much. When Kylee was 6 months old we decided we wanted to voice our concerns a bit more and changed pediatricians to get the answers we wanted, and we are SO happy we did! At 6 months Kylee had her first MRI on her brain and some blood work to make sure her liver, kidneys and muscles were functioning correctly. When her doctor called with the news of the MRI it was heart wrenching. She told us that she "might" have something called Joubert Syndrome. We had never heard of this before and as new parent's you can only imagine our fears of the unknown. She said that she had multiple radiologists examine her scans and they weren't able to tell if this was something she had or not. She then referred us to a Neurologist at both Helen Devos and the U of M Children's Hospital. Our visit with the neurologist at the Helen Devos Children's Hospital was promising, as he told us we should have nothing to worry about and he didn't see any signs of this syndrome. Kylee's pediatrician disagreed with his diagnosis and urged us to still go to the U of M. She also ordered a EEG for Kylee since she thought that maybe Kylee was having seizures. (Her EEG came out normal!!)
Kylee was about 8 months at this time and we made the long trip down there to see Dr. Carlson. After her consultation she stated she couldn't see the scans very well and wanted to bring them to a conference she was going to to have "many" doctor's and other's look at her scan's to give their opinion. About 1-2 months later, she called and said that it does look like she has some of the symptoms, but we won't be 100% accurate until we do genetic testing. At this point we were all over the place as parent's not getting the answers that we so desperately needed and wanted to know what was going on with our daughter! We had started with a great program called Early On to help Kylee with occupational and physical therapy. In January 2014, we met with the genetics doctor and he examined her and checked out her MRI scans. He stated that he was going to send our information to a specialist in Seattle who is familiar with Joubert Syndrome. He felt that he would be able to give us more answers since he is the expert. He also ordered genetic testing be done on Kylee and an ultrasound to check on her liver and kidneys and make sure they were still functioning as they should be. (Her ultrasound came back good! Thank god!)
The doctor in Seattle came back to say that the MRI did show some subtle signs of a child with Joubert Syndrome. We had the genetic testing done in the beginning of February and got the results in the beginning of April. Kylee did have Joubert Syndrome. She has 2 genes. Each of these genes has a significant affect on her living. One can cause water on the brain, but we were told that since we have not seen anything at this point, we should be in the clear. The other gene can cause seizures. We just have to monitor her to make sure we aren't seeing any signs of a seizure from Kylee. During this time Kylee has also been seeing a Pediatric Ophthalmology Specialist for her vision which has to do with the Joubert Syndrome. She has what is called Alternating Nystagmus, Saccadic Optical failure and something else which is a medical term that I yet to figure out. As of now we are still coping with the news and adjusting to the new ways of life to make sure Kylee gets everything she needs. Lots of blood work and check ups. Joubert Syndrome is something that will forever be a part of Kylee's life. There is no cure for it. We have to do everything we can to make sure she has the best life possible and keep a close eye on her at all times. She is our angel sent from above and we will love her to the moon and back!! : )

14/10/2019

JUST A FEW DAYS LEFT TO ORDER!!! 😁😁 Kylee is so close to her goal!
Y’all I can’t THANK YOU enough for everyone who has put in an order for Kylee!! (I think I just went southern there 😆) You are helping her reach her goal and we appreciate it from the bottom of our hearts!

Hello Family & Friends! Kylee is selling some candies and nuts (and much more online...THINK GREAT CHRISTMAS GIFTS!!) for her Girl Scouts Troop. She is raising money to go camping in the Spring ⛺️😁

If you are local and would like to order, we can deliver to you! Just let me know what you would like from the pictures below and how many and I can mark you down! 😁

****ALSO, If you don’t want to order anything but you would still like to donate, the Girl Scouts have an option for Hometown Hero’s where your donation of $6 will help send a can of nuts to our Soldiers! How amazing is that!!!! ❤️***

**Orders and Money are due by October 19th. You can pay by PayPal,Venmo,CashApp or send me a Check! We will deliver right around November 12-14th!**

If you would like the items delivered right to you, you can click on the link below and they will be shipped to your door! 😁

http://bit.ly/2nJ0oIF

We really appreciate everyone’s support! Girl Scouts means the world to Kylee. She loves all the activities, her friends and the fun things they do ❤️
Please let me know if you have any questions!

18/09/2019

This little lady is so strong! She’s such a fighter 💪🏻😁 Look at those little legs just shaking from working those muscles! We are working on strengthening her little ankles. This is to help so she hopefully won’t have to wear braces anymore 🤞🏻🤞🏻🤞🏻🤞🏻🤞🏻❤️

25/04/2019

And this is now!!! 😁😁😁🙌🏻🙌🏻❤️❤️ She has overcome SO many obstacles and has come so far. This little girl amazes me every day! She pushes herself and loves to dance 💃😁 She has come so far over the past 4 years 😁🙌🏻

25/04/2019

This video was June 29, 2015. This was the day that Kylee took her first steps! 🙌🏻 She was 2 years 5 months old. To most, you would think she should have done this long ago. But to us, this was a miracle! 🙌🏻❤️

14/04/2019

This is such a blessing seeing her dance and move like this! You have no idea the future with Joubert Syndrome. When they will hit milestones, if they will be able to dance. I never take anything for granted and celebrate every accomplishment 👏🏻❤️

06/04/2019

Wow it has really been a long time since I’ve updated this page! Life gets crazy and has been even crazier since Kylee started school and is growing like a w**d ☺️❤️
Kylee is in Pre-K now and is loving school! She really wants to be a teacher more than the student 😆 She is in PT and has time with the social worker at school. And she still goes to Mary Free Bed for PT as well. She has come so far with her strength and her goals!
She is running all over the place, jumping, climbing and going up and down the stairs without holding the railing! This may not sound like a big deal to most with a 6 year old, but to Kylee, it’s a huge accomplishment and something we didn’t know when she would ever achieve.
We work towards more goals all the time! Right now it’s learning how to ride a bike and she’s getting a scooter to learn how to balance on that as well ☺️
She’s involved in Girl Scouts which she absolutely loves! It’s gives her that friendship and involvement with girls her age.
I will update more as I go along. For now I will add some pictures and videos of her at Mary Free Bed to show how far she has come ☺️❤️

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235 Wealthy St. SE

49503

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