Sunday, January 10, 2010

Kaela and surgery

I figured this would be a good time to (finally) update the blog. We found out right before Christmas that Kaela needs c-spine surgery. Her top two (C1 and C2) vertebrae are unstable and she also has damage to her spinal cord. Her vertebrae have slipped and pinched her spinal cord. She is going to have fusion surgery to hold her neck in place to stop the vertebrae from becoming more unstable and causing more damage. She also needs decompression surgery in order to give her spinal cord more room. They will be shaving the back of the bones to leave more room for the spinal cord. The surgery hasn't been schedule yet, because the neurosurgeon and the Orthopedic surgeon are trying to get some more information together and are working to find a good time with both of their schedules. They said it should be within the next few weeks. We hope to get a call Monday telling us when it is. Her surgery will be done at the University of Michigan hospital and we feel okay about this. UofM is huge and is also a top hospital. We feel really good about our surgeons too. Kaela is a rare case, both with her form of dwarfism and with her being so young and having this surgery. They said they are a little worried about the fusion holding due to her size and being able to get it done since there's such a small area to work with. They are 80 percent confident that they can get it done, but there's a chance they would have to go back and re do the surgery in couple years due to the fact that she's still growing. They will be contacting a couple other doctors at other hospitals to get some more information. They have done several surgeries like this, just on older, usually average height people. The decompression surgery will be the easier of the two.
They have told us to try and keep Kaela from walking until the surgery and also they ask that when she's in the halo for 3 months, that we try not to let her walk. The reason they don't want her walking right now is due to her spinal cord injury. If she were to fall, this could cause more damage to the cord. Poor Kaela has gone through therapy and finally starting walking short distances on her own a few months ago, and here we are telling her to crawl or scoot on her butt. When she has the halo on, they said they ask toddlers not to walk with it, because they tend to fall a lot. There are usually 4 pins that re drilled in the skull and if she falls they risk having the pins fall out...not good. We are just going to do everything we can to keep Kaela safe.

She's such a good girl though. She just listens and does as she's asked. She had to get a neck brace put on right away when they read the results to the MRI saying her neck was unstable, and she hasn't complained once! Our little girl is one tough cookie. The next few months are going to be hard, but we have wonderful family and friends that are helping us get through all of this.

I will keep this updated as we find out more and through out Kaela's surgery. Thanks everyone for your support, prayers and thoughts during all of this. It means so much to all of us!
Here are a few pics of the kids.....









9 comments:

Destini said...

Sarah, I will be praying extra for you guys for the next few months! So glad that Kaela is being a trooper, and such an adorable trooper at that! Will is getting so big, I can't believe it! Hugs!

Laura Wolf said...

I hope that everything goes well witht the up-coming surgeries. Kaela looks like she is doing really well. I do have to question how you stop a child from walking? I know that with my kids, that would never happen. I hop that you have more success. Good luck!

Katie said...

Such a strong girl! I don't know how my Cole would handle this situation. She is one tough cookie! I'll be keeping her in my prayers! Please keep us updated along the way!

Kim said...

Sarah, First off the pics of the kids are great. They are so in love with each other-that is obvious!Will's smile is just darling and Kaela's determination to strive for independence is also so obvious. I am sad that she has to endure this surgery, truly my heart goes out to her and you and the rest of the family. I know it is going to be hard but know that we are all here rooting for our Kaela. I know she is going to come through with flying colors. They always say kids are amazing. Feel free to vent at any time, smile and laugh with us and share your tears. That's what we are all here for. Hugs!

Greene Family said...

Adorable pictures - Will and Kaela both look like such sweethearts! You all will be in our thoughts and prayers over the next few months! That is awesome that Kaela is a good girl and listens and does what the docs say! She is a tough cookie and will do great with the surgeries! Please keep us posted! Sending hugs!

Melissa Swartley said...

We are keeping you all in our prayers!!! What a strong and cute sweetie you have! Sonya also has some C1 C2 instability and her doctors have talked about future fusions. It hasn't got much worse in the last 6 months though so we are holding off. I can imagine how tough this is for you all, especially now that Kaela is walking short distances independently! What a tough cookie!!! Sonya sends her love and hugs!!!

ROBERTA said...

hello, I have now read this post, but I knew something reading facebook, I do my very best wishes for everything but Kaela is strong and will exceed all very well !!!!!!, I'm not sure I wanted to ask how were doing to notice the problem? Kaela had pain or discomfort? thanks so much and pray for you, kisses. Roby.

jennee said...

I too have a daughter with metatropic dysplasia. She is 17 months old. I will keep your little one in my prayers. This definately hits home for me. Our future with Josie could end up the same. She is very cute. She looks so much like my girl...just different colored hair :)

j3nny1921 said...

hey I don't know you nor you know me but I
was looking for people with my dwarfism and I came cross here. I have also metatropic and I'm 26. I've been through a few things such as what your daughters going through. If your interested in adding me on facebook my email is j3nny1921@yahoo.com or you can email. If I can give advice to help or tips that got me through I don't mind sharing.