Monday, June 24, 2019

3 Years Old

My baby is three years old!  Baylor Jace is the sweetest, kindest, gentlest, funniest little guy around.  I remember after his diagnosis, I was worried he wouldn't be able to talk and function normally but I had absolutely nothing to worry about.  Baylor can talk with you like any other 3 year old. He has a memory that would astound you and he has the funniest little personality.  Baylor is extremely easy going.  I rarely have to fuss at him and when I do, he usually does something to make me laugh and I forget why I am upset in the first place.  He never complains or fusses.  He does therapy sometimes three days a week and never once acts like he doesn't love it.  He takes a 2-3 hour nap each day and all I have to do is lay him in his crib and I don't hear another peep.  Sometimes he will just lay in his bed and play quietly until someone gets him up...never crying or getting upset. 

He loves his siblings and does everything he can to keep up with them.  He loves to pretend fight with Weston or play school with Aubrey.  He doesn't care...he's just happy to be included. Baylor loves to swim and play in the water.  He loves Daniel Tiger and Mickey Mouse.   He loves music and can sing The Greatest Showman word for word.  His favorite foods are oatmeal, pizza, oranges and apple juice.  He is working hard on his potty training and I am hoping that in the next few months he will get it.  He loves all things balls and cars.  Baylor loves his daddy and Papa D more than anything and I just love seeing him with my two favorite men.   

Baylor is the most precious gift we have ever been given...he is the most amazing little guy around and honestly not a person who meets him doesn't instantly fall in love with just can't help yourself.  He makes me laugh and smile each and everyday.  I don't know what I did to deserve such a special little boy but I am so glad he is mine.  We love you Baylor Jace...thank you for teaching me more in your three years than anyone else on this earth has ever taught me.  You've taught me to fight, love, laugh and never give up.  If you have done so much in just three years...I can't wait to see what the future holds.

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 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'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!

Wednesday, January 16, 2019

A Year in Review 2018

I've sat down so many times these last few weeks to begin writing a post about our year and I just was flooded with much that I couldn't even write and had to walk away.  What a wonderful year 2018 was for our family.  We had such a wonderful year filled with so many special, monumental memories.  Some so big that I don't know if words will adequately do it justice. 

First up on our year was Christian starting his new job as a Nurse Practitioner.  This was huge for our family and I still don't believe we have seen all the fruit of this career change just will continue to become a blessing for us as Christian gets better hours, becomes more confident in his abilities as well as financial gains for us long term.  Having him off of weekends was such a breath of fresh air.  Completing Nurse Practitioner school was one of the hardest things we did as a family and we are finally able to enjoy him again and not be stressed with homework or clinicals.   What a huge undertaking Christian took on for us and we are so grateful for his hard work...not to mention extra thankful that it is OVER!!!

Another big thing for us this past year was the selling of our home.  We have lived in that one home since Aubrey was 6 months old, so it held many special memories for us.  We finally got to the point that we realized we needed more space and the neighborhood just wasn't working for us anymore. We are not huge risk takers so this was a big step for us.  Selling our home and moving into a rental was not the funnest thing we've ever done but so worth it. We looked at homes for months but couldn't find anything that fit our needs. We were hesitant to build just because it is a lot of work but ultimately after MUCH prayer and back and forth we knew it was the right thing for our family.  However, never in a million years did I think we would be moving into my parents neighborhood and getting to be just a few houses down!  It is an absolute miracle that everything fell into place and we were able to purchase and build in such a fabulous neighborhood.  My dad and brother are building our home so it makes it even more special.  Hopefully we will be moving in this spring...we are just so excited!  I cannot wait to build many new memories in our new home.

My Aubrey started 1st grade and is thriving in school.  She is reading like a champ and I am amazed at her math abilities...I am terrible at math so she doesn't get it from her mama! Aubrey is just Miss Extravert...ready and always willing to mingle and be social.  She was home with me these last few weeks of December and I was absolutely exhausted by her stamina!  That girl gets up roaring to go at 6 am and doesn't stop until I make her go to sleep!  She is a lot like my mama...full of energy and ready for activities.

Weston Hayes started school at Zoar this year and is loving being in PreK4.  He has also taken off academically and I am thrilled to say he now knows his letters. (I was worried there for a while) He loves his teacher although he still would much prefer to stay home with me.  He is so much like me...loves to be home working on something independently. He is 100% a mama's boy and snuggles like nobody else.  Weston did soccer last year as well as swimming and really found his thing with karate.   He is the cutest thing ever in his uniform and belt.  I am dreading him starting kindergarten this year...that will be a tough one for this mama.

And I have to save the best for last!  My angel boy took his first independent steps in 2018!  We never thought he would be walking at two years of age by himself...that was something we had been told he wouldn't do til 4 or 5...well apparently Baylor didn't get that memo because he has been walking like a champ.  He is absolutely the hardest worker you will ever meet and he is always working with a smile.  His therapist all tell me he is the easiest, hardest working little boy they have ever met.  We gave that walker back to his PT and Baylor hasn't ever looked back.  He rocks those orthotics and if he has long pants on you probably won't even know he has cerebral palsy.  We are so incredibly thankful for his progress and know it is nothing short of a miracle. 

Please keep us in your prayers as we have lots of big decisions to make for Baylor this upcoming year and we want to continue to provide him with the best options for reaching his full potential in life.  I'll post more on his upcoming surgery options once we get back from St. Louis in the next few weeks.

Overall it was a fabulous year...don't get me wrong...we had our tough times sprinkled throughout but overall it was a year of growth and prosperity for us as a whole.  We are so thankful for a great year and look forward to the great memories coming in 2019.