Friday, October 4, 2019

Luke Thomas is A Friend of Mine

Hello again, my friends.

I hope it's finally becoming fall wherever you are.  Fall is my favorite season. I love how God demonstrates the true beauty of trust as the leaves showcase their inspiring colors before they fall gracefully to the ground--trusting that God will bring them new life in the Spring.

The colors of the fall inspire me--the bright oranges, the saturated plums, the warm golds, the fresh greens.  My senses are quenched as I look around this beautiful Virginia city that I call home.  And pumpkins--my goodness I love pumpkins--but no pumpkin spice.  You can keep that for yourselves--that doesn't work for this gal.

Michael and I got married in the fall of 2011--and the light that day was golden.  I'll never forget how that day brought such immeasurable joy--and light.

Today's blog is one that I've been thinking about a while.  Today's blog is about my one and only little boy--Luke Thomas Baudinet.  Luke's name means "light giving," and he certainly does that.  His smile brings me joy each and every day.  His middle name--Thomas--is the name of my father and Michael's brother.  Luke Thomas is a special man who comes from a line of kind, intelligent, and generous Bolton/Baudinet men.

When I was about 24 weeks pregnant, I noticed some spotting.  When we went in for an ultrasound the technician took an exceptionally long time to do her work.  As a very (VERY) large pregnant lady, I was annoyed.

Lady, I'm fat.  My ankles look like summer time floaties   I'm so tired I could sleep in a chair at an SEC college graduation.   Finish up with your dang cool gel and move along.

Turns out that ultrasound tech (who, in fact, is a lovely woman) saw tumors in Luke's heart.  With some more research, we learned (with him still in utero) that Luke had a spontaneous genetic mutation of what is called Tuberous Sclerosis Complex or TSC.

TSC causes the growth of benign tumors all over the body, especially in the major organs, including the brain, the heart, the kidneys, etc.  The day of that diagnosis was, in fact, one of the worst days of my life.  TSC can be life threatening, but it can also be very mild and some kids go on to live quite "normal" lives.  You really don't know how your child will be affected until you know.  

I cried.  I researched.  I cried more.  I read about special needs schools in our area.  I read about speaking devices for non-verbal kids.  I read about brain-shrinking tumor medications.  I researched doctors, and I called them with my desperate pregnant lady voice.  With TSC, we just didn't know what sorts of challenges (if many at all) Luke would face once he was born.

All we knew is that Luke would bring God's light into this world, and Michael and I were put on this Earth to help him.

Luke was born and we discovered he did have tumors in brain and his heart. Luckily, the tumors in his heart have now shrunk and he has been released from his cardiologist.  His kidneys are also clear.

Luke does indeed have a few brain tumors, but none that seem to be causing "trouble," as the neurologists would say.  To be brain doctors, neuros are extremely calm people.  I'll never understand that one.  While I was pregnant, I was reading everything I could about TSC.  In doing so, Michael and I discovered a clinical trial at Boston Children's Hospital for infants with TSC.

After interviewing the medical team there, we realized it would be best for Luke to participate in the study.  This meant that Michael would fly to Boston with Luke every 6 weeks to do EEG's, eye exams, and much more.  This clinical trial's goal was to attempt to ward off any infantile spasms (ie baby seizures).  Those can cause major damage to the brain and impede development.

So, we did it.  I kept the girls at home, and my husband took Luke to Boston every six weeks.  Michael is a traveling champion with the patience of Job. Luke hated most of it, but we were lucky that some of our friends from undergrad at UVA lived in Boston.  One of them is actually a pediatric neurologist at Boston Children's.  So, Michael and Luke stayed with them during these visits--we couldn't be more thankful for their hospitality and support. We desperately hope to return the favor some day.  The clinical trial successfully saved Luke from infantile spasms in his first year of life--this was a major milestone in Luke's development.

However, two months after Luke's first birthday, he suffered his first seizure. With an ear infection and a high fever, his brain short-circuited and he seized.  I don't think I've ever been so scared in my life.  Children respond to seizures in many ways, but mine tends to vomit and lose control of his bowels.  So, when he seized, he threw up macaroni and cheese all over me and tinkled all over my clothes as I carried him into the Emergency Room at UVA.

I remember standing in the ER looking at my little boy, wishing I could be laying in that bed instead of him.  Knowing that was merely a wish, I crawled onto the gurney next to him.  Not knowing if he would wake up.  Not knowing if he ever would be the same.  Not knowing what to do next.  All I knew is that we would love him.

Once they'd moved us to a hospital room that night, I realized I was still covered in macaroni vomit and tinkle.  The angels--I mean, the nurses--offered me some clean scrubs.  As I stood up to change, I immediately got lightheaded and squatted to the ground.  The combination of fear and not eating lunch/dinner really gets to any gal--especially this one who loves mashed potatoes and even a cheeseburger.

The next morning at 4:00 am Luke was his old self.  Happy and ready to go home.  He did NOT want to sit in a hospital room.  The angels--I mean, the nurses--allowed me to carry him around the perimeter of the UVA hospital.  I know, Mom, that's not safe.  But what my little boy wants, he gets.  And believe me, ain't nobody gonna bother this Mama Bear.

As we walked in the dark around the UVA Hospital, I started to sing his song to him.  I've sung this to him since birth.  I have no idea where it came from:

Luke Thomas is a Friend of Mine
Luke Thomas is a Friend Friend of Mine
He's a Friend He's a Friend
He's a Friend 
of Mine.

We sang and walked until the sun came up, and the doctors released him--now with a daily seizure prevention medication.  We rocked on along until another seizure hit Luke about a year later (same thing--ear infection/fever), and we realized we needed a better plan of action.

We changed seizure medication, scheduled more frequent neurologist appointments, and started to wonder how these brain tumors were really affecting our Luke.

I realized that anytime Luke got an infection (cold, flu, fever), he was at risk for a seizure.  I became a nervous wreck anytime he was sick.  I paced the floors at night.  Gave him sponge baths, bought my own otoscope, etc. etc. All the while, of course, taking care of our precious four girls, working full-time jobs, and trying to maintain a somewhat normal pace of life.

Still, Luke wasn't talking.  He had a few words before the second seizure, but after that happened, those words disappeared (this is common in seizure patients).  Luke seemed overwhelmed by all of the words and noises his sisters make/made and he often played by himself.  Still, he loves his sisters, but he needs his interactions in smaller (quieter) doses.

Being the protective mom that I am, I realized Luke needed help making sense of his living environment.  I worked with the University of Virginia's Children's Hospital to get speech and occupational therapy.  This seemed to help him a bit, but he really struggled with being separated from me during therapy sessions.  You see, Luke Thomas and and me--we're buddies.

The spring of 2019 arrived and Luke still had very few words and sounds.  I worried he would never talk.  I worried he would never be able to tell his wife he loved her.  Or laugh with his friends in the lunchroom--or even order a soda at a drive through restaurant.  I worried.  I worried and I worried.

Finally, we decided to get Luke evaluated by a developmental pediatrician. After a few appointments, it was clear that Luke is autistic.  We don't believe him to be severely autistic, but it's quite common for kiddos who have TSC to suffer from autism as well.  In some ways, the diagnosis was a relief, but in other ways, it brought grief--and more anxiety.

Michael and I actually sat with this information for a few days.  Then, we shared the information with family, close friends and loved ones.  It's hard to share the news that your child is autistic--the label is a bit scary and sometimes misunderstood.

But, as a mom of an autistic child, you LEAP into action.  Nothing stops you. You won't rest until you get your child exactly what he or she needs.  But, still, you cry in the shower when no one's looking. You grieve the normalcy. You grieve the simplicity.  You grieve.  That's part of it.

Then, you transform into SuperMommy mode.  I did.  ABA therapy is the only therapy that is scientifically shown to help children with autism.  So, I started calling different centers in Charlottesville.  Some have months-long waiting list.  That's right--months.  Some only take certain kinds of students.  Some don't accept students his age.  Being Luke's advocate was (yet another) full-time job, but that was fine by me.  I was up to the task.

Finally, I found our place--Next Steps Behavioral Centers.

Luke absolutely loves it here--he goes four days a week for 3 hours at a time. Grateful doesn't begin to express the emotions I feel for the staff at Next Steps. They hold a very special place in my heart.

Most people haven't witnessed a miracle.  I will say I've only witnessed two in my life--the first was the birth of my five children in eight minutes.

The second was my son uttering his first words two weeks ago.  

Luke and I have been working on puzzles together in our spare time.  We really enjoy it.

But one afternoon, we were on the porch doing puzzles and he pointed to a horse and said, "Nay nay." 

I looked up.  It couldn't be.  Luke didn't have words that supported meaningful communication.

Then he pointed to a yellow mustang puzzle piece and said, "car."

I began to weep and yelled in my biggest, urgent mommy voice, "MICHAEL, GET OUT HERE!!!!"

Michael came running to the porch, fear in his eyes, and I could tell he was worried that Luke was seizing.

But no, Luke is not seizing.  Luke is talking.  He's talking.  He has words that are meaningful forms of language.

Luke now knows his ABCs, some of the phonetics behind those letters, 123's, many animals and their sounds, and, of course, the typical toddler, "no no."

I can't describe the height of the cloud I have been floating on in the last two weeks.  And what's more, Luke is so happy that he can communicate with me and his family.

Many of you on Facebook ask me where Luke is in some of our pictures.  You have to understand that Luke is easily overwhelmed by his sisters.  They are loud.  They are bossy.  They talk--ALOT.

He's just learning.  He likes to play alone so he can hear himself make these sounds and practice these words.  Please don't mistake his absence as a lack of love or attention.  I'm letting Luke be Luke.  I love him just as he is.

He is my warrior and he will ALWAYS be Luke Thomas, a friend of mine.

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