Tuesday, February 5, 2019

Taking it all in stride...

My sweet Baylor Jace was diagnosed at 16 months with Cerebral Palsy, Spastic Diplegia.  Baylor had an MRI done at 20 months old that showed moderate brain damage caused by PVL.  Baylor is functioning at a very high level and is what the CP world would call "mild" or Level 1.  Baylor is able to walk independently and if he has long pants on to cover his braces, you would probably not even realize something was different about him.  

For now, Baylor does very well in most environments and adapts in most situations.  However, with the Cerebral Palsy, while it doesn't get worse from his brain damage perspective, as his body grows, his legs will continue to get tighter and tighter causing muscle and bone deformities and long term deterioration.  We know that by the time he hits his teen years he could have significant damage and his ability to walk would continuously decline.  While he looks so great right now, we know that the future is not as bright.  My little guy will have to work daily to keep his body from slowly declining and growth will only bring on pain and discomfort for his legs.  The doctor even told us that by the time he is in his adult years, he could be wheelchair bound.  While extremely scary and disheartening...we do know there are options for Baylor that can slow down the deterioration and help him make progress despite his diagnosis.  Things like braces, casting, night splints, Botox, and orthopedic surgeries are all things that can help keep his legs functioning but those are all very temporary.  

There is a surgery that can be performed in St. Louis at the children's hospital that could possibly change Baylor's life.  The surgery is called Selective Dorsal Rhizotomy (SDR) and it is an intensive procedure that treats muscle spasticity caused by abnormal communication among the brain, spinal cord, nerves and muscles. It corrects muscle spasticity by cutting the nerve rootlets in the spinal cord that are sending abnormal signals to the muscles. In basic terms, they cut open his spinal cord to reveal the nerves that tell his legs to be tight.  Once they determine which nerves are damaged, they permanently cut those nerves.  His legs will no longer have the tightness but he will have to learn to use his legs totally different from what he has done his whole life.  We recently traveled to St. Louis to meet with Dr. Parks who specializes in this spinal surgery.  After many evaluations, he informed us that Baylor was an excellent candidate for surgery and encouraged us to have it done sooner rather than later to prevent more deterioration in his legs.  Let me just explain that this is no in and out surgery...it is extremely risky and comes with a long, hard recovery.  Baylor would be in surgery for about 3 hours and then on strict bed rest for 3 days.  He would have to remain still for those three days to allow his spine to heal and not risk any leakage.  After three days he would begin re-learning to walk.  His legs would no longer have the tightness, which would be foreign to him,  and he would have to learn to use his muscles to walk and not his spasticity.  After 7 days inpatient, we would be allowed to fly back to Baton Rouge to begin an intensive 4 months of therapy.  Therapy 1-2 hours a day, 5 days a week for those first few months.  It is our hope that he will be able to bounce back quickly and be walking again those first few weeks.  

As a mama, I am so torn.  I will not lie this has been extremely hard for me.  I want Baylor to have the best possible chance at life but I also do not want to do anything that could possibly be risky or have any adverse effects.  I know the surgery sounds great in theory, but I am a very pessimistic mama and I always consider the worst and the what if's...not to mention the thought of handing my precious, happy little guy over for spinal surgery is just gut wrenching for me.  The decision is weighing heavily on me and I find myself slipping into sadness over the decisions that need to be made for him.  Please pray for Christian and I as we make these tough decisions for Baylor...we love this little guy so incredibly much and our hearts just hurt for him that we have to even consider these options, but we know God didn't make a mistake when he made Baylor.  He is fearfully and wonderfully made.  He is the greatest gift and his joy is magnetic to all who meet him.  Please lift us up in prayer that we will make the best decision at the best time to give him the best possible future.  

As for now we are trying to just enjoy each day and try not to let our days be consumed with his diagnosis...it's so easy to get consumed by the CP and not focus on the amazing little guy that he is. He's hilarious and so full of life...he loves big and smiles continuously.  He is our hero.  He will continue to encourage and amaze us and we can't wait to see how far he will go in life. His determination to do life normally continues to amaze us and we are so proud of him for all his hard work that he does each day.  He is one in a million that is for sure!

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