Thursday, November 23, 2017

Be Thankful

I have sat down to write out my feelings numerous times over the last few weeks only to have to close my computer...  I just wasn't ready to acknowledge all the feelings I've had.  Feelings of grief, sadness, anger, confusion, and even guilt.  Mixed in with those feelings are feelings of great appreciation, relief and even joy because I realize how much worse things could have been.  As the shock begins to subside a little, I am left with a fierce determination.  Determination to see that my boy succeeds in all areas of life. Determination to not let despair take over or swallow me.  Determination to give Baylor all the tools he needs.  Let me back up a little and recap these last few weeks.

Baylor had an extremely traumatic birth.  Even more traumatic than we have really acknowledged.  He was struggling in my belly for a while and in those last few minutes in utero, I would even begin to say he was in peril.  I hate to admit it, but I now believe he was just minutes away from death.  I have no doubt if we would have waited until my appointment two days later, we would have found an unresponsive baby.

Those first few weeks in the NICU, we knew he had been in distress and that it had taken a toll on his body.  His lungs, liver, heart and even brain showed signs of him struggling to breath.  We breathed sighs of relief as one by one his organs began to heal and show signs of strengthening.  Baylor came home after about a month in the NICU and he seemed to be doing great.

I distinctly remember when Baylor was about 6 months old, talking to my mom on the phone and telling her that Baylor was just so different from my other two. I understood that he was a preemie and preemies develop and respond differently from term babies, but it was more than that.  It was a mother's intuition that something just wasn't right. I knew deep down, that something was off.

At 7 months old, I visited a friend because Baylor was barely moving.  He wouldn't roll, sit up or even attempt to do much other than lay or sit up assisted.  He would tire out very quickly and typically would sleep 5-6 hours a day and all night.  My friend, an occupational therapist, was really the first person to agree with me that this wasn't just a preemie issue.  We talked with our pediatrician and she agreed some therapy would be beneficial.  At about 8 months old, Baylor began receiving Occupational and Physical Therapy.  He did wonderful and really began to thrive.  He began to sit up, roll to one side, and eventually even crawl.  I admit, despite these progressions, I still felt that nagging in my heart that he still wasn't catching up.  Baylor favors his left side greatly and it is very obvious that his right side is significantly weaker than his left. I know the worst thing you can do is "google" symptoms, but I did and I quickly became convinced Baylor had cerebral palsy.  I knew it in my heart.  I shared my thoughts with very few people because I never wanted to downplay his progress or be a "debby downer."

After Baylor's first birthday, we were finally able to get his vomiting and reflux under control and we had a diagnosis on his food allergies.  I briefly felt like that would make a difference in his development but much to my dismay, I felt the gap just widening.

Once Baylor's PT started really emphasizing her concern for his stiffness, odd feet and toes, and arm posturing, we decided to go back to the neurologist.  In the weeks leading up to the appointment, I was filled with anxiety.  I wanted so bad to have an answer, but I also was terrified of what it could be.  The day of his appointment, I had a peace.  I felt very calm and I just knew that God had led us to this neurologist and she would provide answers for us.  She was so sweet and kind.  She encouraged us and gave us hope.  While being very uplifting, she also got right to the point.  She didn't sugar coat anything.  Baylor has Cerebral Palsy.  She believes he suffered a stroke right before birth or shortly after.  Hearing those felt like a dream.  Walking out of that office, I just cried tears of sadness, but also tears of relief.  It's been a year a a half of tests, doctors, therapies, and wondering.  Finally an answer.  But one that devastated my soul.

How do you process that your baby has a brain injury that is affecting his muscles and that he will suffer with this for the rest of his life?  How do you process that he will always have to work three times as hard as every other kid to just do normal things?  How do you process that your child will never be 100 percent?  How do you process that you have a child with a disability?  How do you process that Baylor might not achieve certain things that my other children will be able to?  How?  How?  Put aside the hows and I was left with whys?  Why God did this happen?  Why didn't we get him out quicker?  Why our family?  Why my son?  The grief hit me like a tidal wave, but with that grief there was still peace...still hope.  I never felt taken under completely by the storm.  Throughout Baylor's diagnosis, there were glimmers of hope...rays of sunshine.

Here we are a few weeks out from the diagnosis, and while we are still in the grieving stages, we do have such tremendous hope.  Hope that our sweet Baylor Jace will walk and walk without assistance.  We have hope that Baylor will speak and speak fluently.  Hope that Baylor will move and move independently. We have hope that Baylor will be just as smart or smarter than his siblings.  We have hope that he will use this disability as a platform to point others to amazing things.  Amazing things like fierce determination, the will to never give up, proof of hard work and diligence, a spirit of joy and happiness and above all else the fact that our God is a good Father and He doesn't make mistakes.

Baylor will never know any other way.  This journey is his and I have no doubt that he will walk it with dignity and grace.   This is his testimony and I pray that he uses it in a mighty way.  Baylor radiates joy...through pain and struggles, he never lets on that things are hard.  He fights with everything in him and he does it with a huge smile on his face. There will be no limitation that Baylor can't fight obstacle that he won't be able to tackle...and no skill that he won't master.  I have no doubt.  My boy will soar.  In the process of finding his wings, he will minister and bless all those around him.  He's already changed so many lives...and I firmly believe he will teach everyone around him lifelong lessons.   He's such a fighter...he has been fighting to survive and thrive since before he was born and never does he let on that it's a tough road.

So where do we go from here?  We pick up our grief, tuck it away in a place that is never too far away to cause us to forget where we've come from, but we move ahead.  We provide Baylor with the best of the best to give him all the tools he needs to succeed.  We continue to pray over him on a daily basis and bind the enemy from pulling us down.  We treat Baylor like our other children and require him to obey and be disciplined in all areas of life.  We laugh with him, tickle him, hug him, rock him, and savor each and every moment we have with him.  We thank God everyday for his blessings of protection and the gift of giving Baylor to our family.  We continue to research new procedures and techniques for dealing with Cerebral Palsy, but never doubt the healing that comes from God alone.  We take one day at a time and allow Baylor to progress at his own speed.  We never let his disability become a label, but rather a motivator for greatness.  We love and embrace each day that we have with Baylor because we were so close to a lifetime without him.  Above all we cling to hope....God has never once left our side and through it all we are stronger than before.

"My hope is built on nothing less...than Jesus' blood and righteousness,
 I dare not trust the sweetest frame, but wholly trust in Jesus name.
Christ alone, Cornerstone. The weak made strong, in the Savior's love.
Through the storm, He is Lord, Lord of All."

This sweet boy reminds me each day to be thankful.  We have so so much to give thanks for.  
To God be the Glory...for all He has done. 

Monday, October 23, 2017

Fall Fun with Family

What a busy few weeks we have had over here at the Moots' House.  We are steadily moving further into the year and our making our way into the fall.  I can't even begin to wrap my head around the fact that Christmas is about 7 weeks away...nor can I believe that Christian will graduate NP school in just a few weeks.  We started this journey almost three years ago when Aubrey was just three years old.  I remember saying, "She will be 6 when you graduate!" and that seeming so distant and far off...but here we are just days away from C's graduation and a new chapter in our lives.  Baylor has never known a life with his daddy not working every single weekend.  I have no doubt our children will only blossom once their daddy is back and able to resume a normal routine.  I just can't wait.

We've had a lot of great events these past few weeks and I wanted to make sure to document these special days.

First up C and I celebrated 8 years of marriage!  WOW! I can't believe we have been a married couple that long and have three babies too!  My dreams have been fulfilled more than I could have ever imagined.  Christian is everything I could ever dream of in a husband and he is my best friend.  We have so many laughs and share so many wonderful memories.  We've walked many difficult roads from miscarriages to health scares to just day to day trials, but we have always managed to come out on the other end much stronger.  We've had a month long NICU stay with Baylor, in the midst of full time school and work in addition to two small babies at home but again we made it. We are so blessed and we are constantly in awe of what we have been blessed with in our marriage and family.

We celebrated with dinner to our favorite restaurant and then we did a painting class. It was so much fun!  Christian did half and I did half.  It was not easy allowing him free reign with painting...I so badly wanted to reach over and paint/correct his picture...but just like with marriage, it took teamwork and ultimately we had a unique masterpiece. Such a special night!

We also celebrated our sweet Bre's 6th birthday!  I can't even begin to tell you how special this little girl is to us.  She is such an amazing big sister and each day she gets a little bit sweeter.  She's always been a strong willed child, but I am seeing her little heart soften and become more and more the sweet and kind little girl I so desperately want her to be.  She is working so hard in kindergarten and has stayed on "green" for behavior every single day so far.  I am just so proud of her and how hard she works.  Aubrey does not give up...she will put her mind to something and she will work at it until she sees it to completion.  I hope and pray she will continue to use that perseverance and strong will to make great decisions and impact the world in a mighty way.

I also was able to go to Aubrey's very first field trip to the pumpkin patch.  We had such a great time.  Aubrey was not the least bit concerned that I was there and was totally doing her own thing.  She is such a mess.  All the other little girls were clinging to their mommies but my Aubrey was at the front of the line, ready to tackle the next adventure.  Left her poor momma in the dust! Even though I felt a little neglected... we still had a wonderful time.  


And my sweet boys are just doing great.  Weston is such a momma's boy and it never fails that he manages to get me to let him stay home with him even when he should be at school.  He is such a smooth talker and can melt my heart in just one sentence. He is the smartest three year old I know and his personality is just hilarious.  He keeps me laughing and I just adore his little self. 

 Bay Bay continues to be just a little sack of sugar and pure joy.  He is working so hard at therapy and continues to make great progress.  We are so in love with that angel...he is pure heaven. 

Oh and last but not big girl learned to ride her bike with no training wheels!!  She is absolutely a rock star when it comes to riding her bike...she's such hard worker and I am so proud of her!  

Wednesday, September 6, 2017

Bay Bay 14 months-making progress

My angel boy is 14 months old and he is doing so great!  We are beyond thrilled with his progress and's like things have just clicked for him and he is thriving. So much has happened in the last few months with him and I finally feel like we are getting some answers and making some headway.  

Baylor has had terrible reflux since birth, so much that it has truly hindered his development and growth.  We have seen specialists, been on medication, altered his diet, but nothing was working.  At his 13 month appointment with the GI doctor, we finally decided that something more was necessary. The doctor recommended a scope to see what exactly was going on.  We were told either he had a hernia or some type of food allergy.  We went ahead and scheduled his procedure as quickly as possible becuase we knew Baylor needed to start gaining weight and growing. My little guy was such a trooper and didn't even fuss one bit.  Momma on the other hand was a nervous wreck!  They put him to sleep to do the scope and we waited anxiously while they determined what was going on.  

The doctor came out and told us all had gone well, and that Baylor had something called Eosinophilic Esophagitis (EoE) which is a chronic, allergic inflammatory disease of the esophagus (the tube connecting the mouth to the stomach). It occurs when a type of white blood cell, the eosinophil, accumulates in the esophagus and attacks when certain foods are present. This was very overwhelming to us and we were full of mixed emotions...disappointed that this was not going to be an easy fix, but rather a life-long battle, but we were also relieved to finally have some answers. 
We met with an allergist and are coming up with a game plan in order to get Baylor on the right track.  It will be a long process of eliminating certain foods, more scopes and lots of speech and feeding therapy, but at least we have a starting point.  He will need at least three scopes a year for the next few years just to make sure he is responding to the medicine and diet.  

We've started by eliminating milk and we can already see progress and results.  Baylor's vomiting has greatly slacked off and we are noticing a huge difference in how he feels.  The doctor said EOE is extremely painful, but it is all he has ever really known.  Baylor is such a trooper...he has never once let on that he was uncomfortable or in pain...he's always been so happy!  His physical therapist is so excited that now that we are getting his vomiting and pain under control, he is starting to move so much more!  Baylor is crawling like a champ and just this weekend he has started to stand up!  What a miracle!  I have no doubt that by his second birthday he will be walking.  

Baylor is just the most amazing little guy ever, I cannot even begin to express how proud we are of him. He has been fighting since the womb and he continues to amaze us with his fierce determination.  I firmly believe that God has something incredible in store for Baylor's future. I am just so blessed that I get to be his mama!  He is a true miracle.  Keep on working hard Bay Bay...the sky is the limit!

Sunday, August 20, 2017

First Day of School 2017

What a wonderful summer we had! Jam packed full of beach trips, field trips and lots of play-dates. We swam more this summer than we ever had before and it was an absolute blast.  We saw movies, went to the library, drank lots of slushies, went to the park, chick-fil-a and swam like fish.  I would say our summer was a success.

But all good things must come to an end and my little guys started back school this week.  I was overly emotional because my sweet Aubrey started "official" school!  Kindergarten is the real deal.  I had a very brief moment of wanting to home-school her, but that passed quickly.  Aubrey is such a social butterfly, so I knew school would be a huge adventure for her.  She is attending a small, christian school near our house and it is just perfect for her.  She has loved every minute of it so far and I know it will continue to be a great experience for her. Weston started back at his preschool, but it has been more challenging for him because he really misses Aubrey.  He is very dependent on her and feels lost without her. He is adjusting and hopefully the morning meltdowns will subside.  He is such a momma's boy, so it is very hard for me to make him go.  I just melt when he says, "but I just want to stay with you!"  My sweet Bay Bay is home with me full time, although we spend a good portion of our week with him in therapy.  We are getting Speech, Occupational, and Physical therapy each week.  It is so exhausting but we are seeing huge strides in his development.  He works so hard! 

I am so proud of each one of my kiddos!  They are so unique and different, but all three are equally amazing and determined.  Here's to a great year of Kindergarten, Pre-K3 and therapy!  

Time please slow down...  
I just love their innocence and sweetness!!!