Tuesday, September 24, 2019

One Month

Well here we are.  Exactly one month out from the day I have been dreading for almost a year now.  Surgery day.  The day that will ultimately change Baylor's life...hopefully only for the better. 

Everyday I feel like I am constantly "on watch" with Baylor.  I watch how he walks that particular day, I watch and monitor how tired he gets, I watch to see if he falls more or less than the previous day, I watch his to see if there is stiffness in his arm, I watch to see if he can take the steps of a curve or not,  I watch how he eats and the list goes on.  I am constantly worrying about my little guy...more than any of my other children.  It is an exhausting job and one that is probably not even necessary but I can't help it.  Baylor has a disability and even though it is considered mild, it affects every single aspect of his life and mine as well. 

I once read an article that said even though we can be thrilled our child's disability is mild, the mildness comes with a whole new set of struggles and worries.  Since the disability is somewhat masked by a normal output, people fail to realize the struggles, people fail to see the daily hardships that go along with being somewhat typical.  For instance, if someone is in a wheelchair, it is obvious that their legs/muscles have a problem.  The disability is right there in the open.  But for someone like Baylor, he looks normal to the average eye and most people probably wouldn't even be able to tell he has Cerebral Palsy.  What they don't see is the endless hours of PT that it takes to keep his legs functioning, they don't see the debilitating fatigue he faces after just an hour or two of normal activity, or the extra effort it takes just to do normal things like eating and chewing.  It's difficult as his parents because we see him want to be like his siblings and at this early age he doesn't really know his limitations, but the older he gets the more the disability will separate him from his peers. The older he gets the harder it will be for his bones and muscles to keep up.  He will continue to decline and face constant struggles within his own body.  As scared as I am for this surgery, I am more scared of watching him struggle...no parent wants to stand by and watch their child deteriorate...and for that reason alone we will move forward with this surgery.

It will not be an easy surgery...it will be an intense shock to Baylor's little body. It will require at least 6 months to a year of extremely hard work with daily therapy and still after that a lifetime of weekly therapy to maintain his gains.  He will face weakness and fatigue unlike anything he has known before.  However, it is our hope that he can build real muscle and strength that will keep him mobile for the rest of his life.  Something that would be in question if we just left things the way they are now.   Opening his spinal cord and severing nerves is extreme.  We are well aware that this seems like a lot for someone who is so functional, but the future for Baylor is what is at stake.  We can't stand by and let him have to continue to fight against his own spasticity and tightness.  We can't let this disease continue to wreak havoc on his muscles and joints.

In my mind I know we have to do this surgery, but in my heart I am terrified.  Completely and utterly petrified to hand over my angel boy and let them perform a risky surgery.  Maybe it has been done on 4000 children with CP, but this is my boy...my little guy, my barely 24 pound little baby! I am having to hand him over and allow them to work on his spinal cord for 3 hours. I picture him laying face down, exposed and vulnerable and I just can't handle it.  My heart can't go there.  It's just too much.    The thought totally sends me into a spiral.  I have had more panic attacks and breakdowns this past year than ever before. I have to stop and refocus my attention to the great things that Baylor will accomplish through this and find the good in the journey. I have to instead change my mindset and proclaim that this will only make us all stronger. I share those vulnerable moments not for sympathy, but to show that this life is not perfect and although our family puts on a brave face and we may look like we have it all together but honestly we don't....we struggle....we fight...we cry...we breakdown and we have our un-Christian like meltdowns...but we do get back up and keep going. If nothing else Baylor has taught us that we have to keep going. We have to keep putting one foot in front of the other.   We put our trust in the Lord and know that ultimately...no matter what He loves Baylor and He will do what is best for him.  Relinquishing control has never come easy for me and this is probably my hardest test to date.

So that is where we are...one month from today we will embark on the SDR journey and pray that we see wonderful results.  Throughout all my doubts, fears and uncertainties, the one thing that I have NEVER once questioned was Baylor's ability to get through this surgery.  I know without a doubt if anyone can overcome the obstacles... it will be him.  He is by far the strongest little person I have ever met and I know he will work harder than anyone to see results.  He will fight day in and day out with a huge smile on his face.  He will charm every nurse, doctor and therapist with his positive outlook and sweet demeanor. He will make us laugh at every tough stage. He is Baylor BRAVE and I am so thankful I get to witness first hand what a true hero looks like. 

"And the LordHe is the One who goes before you. He will be with you, He will not leave you nor forsake you; do not fear nor be dismayed.”

Tuesday, September 10, 2019

Summer and Diet Coke

I am such a slacker when it comes to blogging.  I really think about blogging often, but I never really make the time to sit and write out what I am thinking.  I plan to do better. 

Summer was fabulous and exhausting at the same time.  We filled our days with fun and sun but I can honestly say we were ready for school to start!

We are officially back to school and I am loving it.  I absolutely adore being with my children all summer long, but they really do thrive and do better with a schedule and consistent routine.  I am able to get so much accomplished and done while they are at school...it is very liberating!  My Aubrey Lane started 2nd grade this year and my sweet Weston started K5.  Baylor Boo started a part time pre-school at our local public school and he is thriving!  All three are loving their teachers, friends and school!  I am so pleased that they are settling in and starting to get the hang of the school routine. 

Morning have gone surprisingly smooth.  The life saver for me has been getting up before the kids.  While this is very hard for me, it saves me from having a chaotic morning.  I usually set my alarm for around 6:30 and get some coffee and do my devotional.  Aubrey and Weston are up by 6:45 and both are very needy morning people.  Lots of snuggles and encouragement are needed for both of them.  Weston in particular. We are usually ready to go by 7:40 and dropped off by 8.  I am trying to incorporate some sort of physical activity for myself in the mornings after drop off and I am enjoying that as well.  Usually Baylor and I take a walk or I will run if Christian is home. 

Another huge thing that happened over the summer was I officially got off all Diet Cokes.  This is nothing short of a miracle.  I have drunken a LARGE Diet Coke every single day at lunch for years.  YEARS I tell you.  Our pastor preached a message on strongholds and something really struck a nerve with me and my soda addiction.  I knew it wasn't a sin or anything, I just realized that it wasn't good for my body or mind and I wasn't sure I could let go of it.  It was a real addiction for me.  I had tried weaning down in the past, but it never worked so I knew I had to go cold turkey.  I went for it back in May and haven't looked back since I said goodbye!  I feel a thousand times better and while it was tough at first, I honestly don't really ever crave them now.  I had one a few weeks after quitting and it just wasn't that tasty anymore.  I am so shocked and proud of myself for knocking the habit.  It was a huge step for me. 

Summer for us was a blast, jam packed with tons of swimming, movies, parks, beach time, vacations, library visits and much more.  I cherish every summer with my little guys cause I know soon they won't want to spend their summers with me!  So long summer...it was great!

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 him...you 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 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!

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 emotions...so 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 yet...it 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.

Thursday, November 22, 2018

Abundantly Blessed

I cannot even wrap my head around the fact that it is almost December.  This year has just flown by and I am barely able to catch my breath before the busyness of the holidays are about to be upon us. I just wanted to take a few minutes out to reflect on the blessings of our life.  We are so beyond blessed and even though there are some tough days that we face, we realize just how fortunate we are.  

We have the most amazing extended family...a family that challenges us to be better people, a family that supports us no matter what, a family that prays for us, sits with us at church, cries with us when times get tough, buys us donuts and cookies, and just loves us with an unconditional love.  Not to mention families that truly love each other and want to be around each other.  There isn't fighting, strife, jealousy or bitterness...but we fight daily for love and peace amongst us all.  It is such a blessing to have parents that go above and beyond for us, siblings that are truly our best friends and cousins that make everything so fun.  Sometimes I just don't understand how we hit the family jackpot but I am so grateful that we did.  

I am so thankful for Christian and I's jobs.  We have been so incredibly blessed with two great jobs that allow us to prosper, but to also invest time into our children.  I have the ability to move my work schedule around and work when it is convenient for us.  I have a job that I truly love and am passionate about and long to see the company grow and prosper.  Christian has a wonderful job that he enjoys and one that challenges him, but one that also allows him to minister to those in need.  I look forward to the day that Christian can travel and bless others with his gift of healing and knowledge of healthcare.  

I am so thankful for my precious children.  The only thing in life that I really ever wanted was to be a mom.  My three kids make it so easy to love being a mother.  They make it fun, messy, chaotic, stinky and sometimes frustrating but most of all they love me like crazy.  They each, in their own ways, enrich and enhance my life and I am savoring each and every moment with them.  Aubrey is such a sassy, smart and talented little girl.  She is so full of life and loves to be in the middle of all the action...she finds such joy and excitement in every aspect of life.  I tell her all the time how thankful I am that God gave me a little girl.  She is so my mini me and I see so much of myself in her.  When God gave me Weston, he knew I needed an easy middle child...one that would counter balance my two bookends.  Weston is the easiest, sweetest, smartest, most articulate little boy you will ever meet.  He is extremely attached to me and I love being his number #1. I tell him all the time that we are soul buddies...he is a homebody like me, loves to snuggle and take naps and enjoys the simple things in life.  My Baylor Jace is Mr. Happy.  You will not ever find him having a bad day...no matter what...he just embodies joy.  Baylor has thrown us every curve ball possible when it comes to his health and we still have a long road ahead of us with him, but his happiness is such a comfort to me.  I know that no matter what he faces, he will do it with a positive attitude...and with a fierce determination.  His abilities and skills never seem to stop advancing and I am so amazed by his growth.  

I am so thankful for Christian.  He works so hard and is so such a man full of integrity.  He loves me even when I am tough and that can be quite often.  He is hilarious and makes us all belly laugh.  He loves life and is up for anything...camping, traveling, games, activities...you name it and he is usually on board.  He is so smart and his ability to fix almost anything is one of my favorite things about him.  I am so thankful for how hard he works to support our family and provide us with more than we need. 

I am so thankful for my salvation.  I can't image walking through life without the security of knowing my Savior.  This life is so full of ups and downs and hard times, but having a solid rock to fall back on is such a comfort.  I am thankful for the chance to worship God in a wonderful church, surrounded by others who desire to serve God and for the opportunity to grow in my faith.  

I am so thankful for my girlfriends. We chat almost everyday and I love that they love me for me...including all my quirks.  We laugh and share stories about our crazy lives and just encourage one another.  I love that our friendship has spanned almost 15 years and growing stronger each day.  

I am so thankful for my life...I know sometimes social media or blogs can make it seem like life is always perfect and rosy, but I will be the first to admit life can be downright crushing at times.  Sometimes daily life can feel overwhelming but I am so thankful for family, friends and a Savior that I can count on to lift me up and keep me going.  This Thanksgiving, I hope and pray that I can take these blessings I have been given and somehow bless others.  May we as a family, always aim to find the good in life and be a light in this dark world.  I pray that we continue to lift up the name of Jesus and proclaim His goodness no matter what.  

Time for me to go put on my stretchy pants and head to dinner!  Thank you Lord, for blessing me so abundantly and graciously.

PS: I re-read what I wrote this time last year, just weeks after finding out Baylor had Cerebral Palsy...I just can't believe how far we have come in a year.  Baylor is proof that God is still in the miracle working business.


Friday, September 28, 2018

So long Sweet Summer!

So I know I have totally fallen off the blogging bandwagon and I do hate that I have been so terrible at blogging and recording our daily lives...but I am so stressed just living out these days, that I don't have much time to actually write down or record what we've been up to.  These summer days are coming to a close and Fall is approaching quickly.  My cuties will only be 2, 4, and 6 for a few more weeks because I will have a SEVEN year old!  My sweet Bre is going to be turning 7 and she is just growing way too fast.  I blinked and she is in 1st grade!!

We had a wonderful time at the beach at the end of August to close out our summer and it was just the icing on the cake to a wonderful summer.  We took a trip with my family to Watercolor and it was so much fun.  I will admit that I worried for about a month leading up to the trip, because we were staying in a beach home with stairs and a pool...both a recipe for disaster when it comes to Baylor.  I would wake up in the middle of the night just panicking...thinking about Baylor slipping out one of the doors and falling into the pool...just a total nightmare for me.  After discussing this with my family, we decided that hiring a babysitter to keep extra eyes on Bay Bay was the perfect solution.  We took our fabulous babysitter with us and it was just so amazing...I was able to relax and not feel so stressed out with the kids.  I felt totally spoiled having her to help me with everything from bath time, to sunscreen to changing diapers.  It was such a wonderful time, spending those special moments with my family.  I have the most amazing family and we sure did make many memorable moments on that trip.  Dinners out, beach time, pool time, golf cart rides, pedicures, late night talks, walks with my mama and tons of laughs throughout.  Those are the memories I will cherish forever.

After our fabulous trip, my kiddos all started school.  I know they were all thrilled to get back into a routine and I was able to find my sanity again after having them to myself all summer! Aubrey Lane is in 1st grade, Weston is in PreK4 and Baylor Boo is in the Frog class.  The boys are just part time because I want to savor these days that I can keep them home...I know first hand with Bre just how quickly it goes.  Aubrey is rocking 1st grade so far and I am so incredibly proud of the things she is accomplishing. Here's to a wonderful school year!

Love these cuties...praying daily that they make an impact on those around them.