Keaton was diagnosed with this on his 7th birthday. We are scared to death. Keaton will need to wear a Boston Brace for 20/24 hours a day. He also has an area of syrinx in his spinal cord that we need to see a Neurosurgeon for ~ He was emergently fitted for the brace and he will get it on June 10th. (Normally takes 2 months) The doctor said that if he does not wear the brace, in less than a year, he will need back surgery and rodding. All the research I have done states that even with wearing the brace 90% of kids with JS still need surgery. Those are terrible odds. He will have to wear a brace until he stops growing. That is forever in his little mind. A lifetime.
I am praying that we don't have to do any type of neurosurgery. We are scared for him and overwhelmed. His life is forever changed ~
10 comments:
I am so sorry to hear this news. I will keep him in my thoughts and prayers. You all will find the strength to get through this. I know you will.
Blessings
Diane and the girls
I am so sorry you are hit with this news, and we can totally relate. Our 3 year old daughter (adopted from China)has scoli among other issues and has recently had rods put on her spine. She wears a TLSO brace except when she is sleeping. I was aprehensive about it as well, but it can be hidden under her clothing and other than her getting hot, she seems to not mind it at all. She has had spinal cord surgery as well so I know you all must be totally overwhelmed with all of it hitting you at once.
I might recommend that you contact Shriners hospital for a second opinion. They are cutting edge on technology and have advances for these kids. We live in GA but have our daughter's care in Philly at Shriners. I can give you more info if you need it.
Just know you aren't alone and we will be praying for you all as you navigate through this "new normal "
Hugs to you!!!
Hi Walla family! I Was reading your blog on Keaton and it touched my heart. You see, I have had scoliosis since I was a child. Now I am 57 years old and am very healthy and I do everything even exercise regularly. My parents never took me to the doctor for it so I made the best of the situation. The army rejected me and I was classified 4F. In my early twenties, I went to a Christian prayer meeting and was prayed over and one of my legs was shorter than the other due to the scoliosis and it grew back to the same length as the other one. This helped me a lot and gave me more confidence that I would be totally healed. There is still a pronounced curve in my back but through my faith in God I believe that it will be totally straightened. I thank the Lord that I had a relatively normal life despite the odds. I started praying for Keaton and am believing for his total healing in Jesus name. May your family be blessed for the all the good that you are doing.
Oh, I'll be praying for you as parents and for Keaton as a scared little guy. You're in our thoughts often.
Shelly,
I am VERY sorry to hear about Keaton's diagnosis. I can not even begin to imagine what your family must be feeling. Our family will be praying for you all. PLEASE keep is posted.
HUGS,
Megan & Greg (& the girls)
This is such terrible news, how did he get this?
Shelly, my heart goes out to you as a mom and to little Keaton. We will be praying for you all.
Love,
Laura K. and family
Keaton will be on our prayer list @ First Baptist Church Windermere. We are all pulling for you, Keaton!
I just read your story. I have had scoliosis most of my life, and wore a back brace in high school. My curve was at 55 degrees until I had my first baby, and then it progressed to 78 degrees. Surgery was obviously necessary, so I had both the fusion and rods put in. I can tell you I have never lived life more fully and pain free since I had that done. Don't be scared if it comes down to surgery. Just make sure you have the right doctors. I teach aerobics and have had 2 more kids after the surgery. I feel awesome! Now my two boys both have scoliosis (they are 4 and 6) so I understand how it feels to have your children go through this. My prayers are with Keaton. You have a beautiful family.
PS - I'm a Christian, strong believer and my husband has been a pastor for almost 20 years. I'm glad the Lord led me to this site :)
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