Kaitlyn had a MRI done in April, ordered by her Neurosurgeon. To check on her spinal cord, he wanted to see how things were doing since her last surgery in June of last year. She has been getting yearly MRI's, normally every spring, since she was 1 years old. I have such a distain for MRI's, they have never revealed anything to positive for my baby girl. But, I suppose I am also thankful for them too. This MRI also did not put forth any "great news" for Kaitlyn :(
We were told that she has what is called a Syrinx (ser-nix) in her spinal cord. What in the world is that, you ask? Well, the good news is that it is not a "new" medical condition. As a Syrinx is not a medical condition in and of itself, merely the outcome of one. A syrinx results when a watery, protective substance known as cerebrospinal fluid, that normally flows around the spinal cord and brain, transporting nutrients and waste products, collects in a small area of the spinal cord and forms a pseudocyst (a Syrinx). Cerebrospinal fluid fills the syrinx. Pressure differences along the spine cause the fluid to move within the cyst.
Physicians believe that it is this continual movement of fluid that results in cyst growth.
A number of medical conditions can cause an obstruction in the normal flow of cerebrospinal fluid, redirecting it into the spinal cord itself. Medical conditions such as Chiari Malformation, Tethered Cord, Spinal tumours, Spinal Cord injury. You can also get a syrinx for a unknown reason, without any of these other medical conditions.
As we already know, Kaitlyn was born with Chiari and later also developed a tethered spinal cord, so she has two of the known causes for a syrinx. I was always aware that one day, one could possibly develop in her little spinal cord. I have just always held out hope that she would some how skip that chance. The best way to understand this, is that she has a cyst in her spinal cord. Kind of just like you get a cyst in other parts of your body, only this would be a bit more serious.. since it is in your spinal cord. Her Neurosurgeon called us in for a clinical visit shortly after calling us with this news. He showed us the MRI scan, and pointed out her syrinx. He looked her over, had her walk across the room on her tip toes and then on only her heels, had her jump up and down a bit, checked her reflexes as well. He said she looked good, and her gait (the way she walks, moves) looked good. He told us that he wants her to have another MRI in July, while she is out of this cast. So she would have two MRI's 3 months apart.. instead of waiting the normal once a year. He wants to closley monitor this, to which we agree is important. He said that if it goes up greatly in size from our clinical visit (about 3 weeks ago) to the time we read the next MRI results... we may have to discuss surgery to drain the syrinx. If this syrinx does grow greatly in size, Kaitlyn could start to see some major symptoms from it. Involving pain, stiffness, weakness in her legs ect. I don't really feel like going to greater detail with that... right now. But, basically nothing we ever want her to experience of course. It is a lot like her tethered spinal cord, if left untreated.. it could have really done some major damage to her spinal cord.
We are again left feeling upset for her, deeply saddened, our hearts hurt for her. When hearing the words "surgery" again, it cut me from the inside out. We of course asked him every question that immediately came to mind, everything we could think of. We left feeling hopeless and exhausted. I cried silently to myself on the way home, I was.. I am devastated. With precious Kaitlyn in the back seat of the van, I tried not to let her know I was upset. Because as usual she was smiling and singing back there, unaware of anything wrong. Just a normal happy go lucky three year old girl. It has gotten to the point I think, that when receiving such shocking and devastating news regarding my baby.. I don't know how to respond anymore...and I don't think I can really explain in words what I mean. How much shock can you take as a Mama? I'm not sure. I have not written about this until now because I just didn't want to. Writing about it makes it very real.. makes me sad. I feel like all I can give my "readers" my friends and family is bad news about my baby. But, I know there has also been good news in this journey. PTL.
David and I aren't taking this news lightly, we are researching all we can about her syrinx and the surgery for it. We seeking God for wisdom and strength, we want to make the best and most informed decisions for her. I know that God will show us the right thing to do, and when to do it. Just like he has in the past with her other two surgeries. It goes without saying that, yes... David and I are fully aware that God is control here, and that He has a plan for our daughter and He and only He, knows the outcome. We just need your prayers and support right now.. Kaitlyn needs your prayers very.. very much. If you remember her, please just pray that God's will would be done regarding this. That if it be His will, that her syrinx would go away on it's own (this can and does happen sometimes) or even that it would simply NOT get any bigger. I know that if God's will is done, weather she has the surgery or not, weather I like it or not... it IS the BEST thing for our Kaity girl. That is what I want, and that is what David wants. Kaitlyn is God's, and He loves her more than we ever could. I stand in awe of that fact.. the amount of love that is.. is amazing to me!
This also means that the next casting is unsure, until we can get the next MRI results. If we get good news the next MRI, then she will go for cast #9 on July 18th. All we can do is pray and believe that God has this in His ever capable hands. That is what I am leaning on everyday and will continue to do. Please pray for strength for this Mama.. I can't describe how I wish I could take this ALL away from her. I feel so helpless. I just wish with all my heart she could have a happy summer.. like every other child.. full of water, water, water and more water fun!
Thank God she is as strong as she is.. so happy all the time :) She's amazing! We will continue our everyday life as normal and make our summer days as happy as we can :) Lord willing, we are planning to take her and her siblings to The Great Wolf Lodge while she's out of cast for some WATER FUN! whooray!!
Thank you dear friends and family for taking the time to read this blog post and for all of you that earnestly pray for our girl. I know the Lord will richly bless you in return for caring for Kaitlyn :) We love you all and one day Kaitlyn will know just how much she was loved and prayed for by people she has never meant before! God bless you all... Rachel :)