Thursday, March 20, 2014

A new turn in the road...

When my sweet little baby was just a wee thing, he would wrap his little fingers around his thumb of his right hand.  We thought it was so cute!  Who needs a binky when you can hold your own thumb, right? 

It got to be a bit concerning, and after some limited internet research, I diagnosed him with an "indwelling thumb," which is simply a condition where baby doesn't know how to get that thumb out.  But at about six months, we began to notice he was only using his left hand to reach for things or bat at objects held lovingly directly over his face by older siblings.  So to the doctor we went.  We didn't see our regular pediatrician and he certainly didn't seem worried about anything, but said therapy would be a good idea.

Off we went to occupational therapy, and at the end of an extensive assessment, it was deemed that Baylor would need therapy to get that thumb out.  We have enjoyed our therapy visits, and he has improved since we started going.  He can use his right hand and arm, but he will go out of his way to use his left!  At his 9 month checkup with our regular pediatrician, I commented that B was doing therapy for his hand.  And THEN came the shocking news - after a more thorough exam and finding that his entire right side was weak and not working right, my doc thought he might have had a stroke in utero (I didn't even KNOW babies could have strokes in utero!) and that we should see a neurologist.  Yes, I was scared and had no idea what was in store for us.

After waiting and waiting, we finally got into a neurologist at Primary Children's Medical Center, and after an HOUR appointment with a doctor whose name I associate with eggs (Dr. Benedict) she was pretty sure he'd had a stroke and ordered an MRI to determine what had happened.  I was so amazed at the level of her care and how long she spent with us.  She hosts an annual picnic for all of her "kids" and their families. I think this will be a great help for me throughout the years. She was so kind and one thing she said to me has really stuck with me and comforted me, "Nothing you did caused this, and you could not have stopped this from happening.  It was simply bad luck." I hadn't thought that I had done anything, though there were times during my pregnancy I would have happily had a vodka to knock me out and give me a good night's rest (yeah, right - I know!)....but to hear her reassure me was really wonderful.  Now with an official diagnosis, that dark thought has entered my mind, but I know I'm ok and this just happened.  That's all.

We had the MRI March 10, and B did great! Our time was at 11:30 a.m. and because of the sedation he had strict eating rules - we had a long night of waking him at 5 a.m. to feed him some solids, then again at 7 a.m. to nurse, after 7:30 a.m. nothing but clear liquids, then nada from 9:30 until MRI time.  What a stud - he hardly complained at all.  Sacrificing my sleep was worth it! 

We were happy to be greeted by wonderful nurses, and especially by my friend Tiffany (I work with her in our ward's Nursery!) who happened to be on shift that day.  She brought B a cute blanket and toy from her private stash of goodies for cute kids.  ;)  He loved looking at books, playing with his new cars and checking out all the cool stuff hanging on the wall.

The sedation nurse then came in and got right down to business. "First of all," she said, "He is FREAKING ADORABLE! (duh)  Second, I love his name!  Third - now I'll tell you what we're going to do."  Needless to say, she was great!  Baylor, however, did not notice her greatness, especially when she swaddled him tightly and inserted an IV into his hand.  He hurt.  :(  Hands down, the hardest part of being a mom is when you can't take pain away from your kids.  The Spirit whispered then to me so sing "I Am a Child of God," and I am so grateful that I listened to the prompting as he calmed down noticeably and so did I!  I knew we were in good hands and being watched over. 

Once the IV was in, we carried him to the MRI and recovery room, where they administered the medicine to get him to sleep.  Was I selfish that I wanted to hold him and wouldn't let his dad? :)  After about 5 minutes, he was out and they prepped him for the MRI.  He got sooo pale and looked so unnatural lying there - the nurse could see my concern and told me gently that they always get pale, but that they were monitoring him closely.  I felt better, but I still don't like to think about him looking like that.

Jason and I snuck out for a quick date to the cafeteria (hey, we get them when we can - but that was probably our most expensive 35-minute date EVER), and 3 bites into my sandwich we heard us called on the loudspeaker.  Oh boy.....Baylor was awake and screaming his head off.  Ok, his head was still attached, but he was ANGRY.  Would not take the binky. Would not take dad.  Mom - he quieted right down.  Can I just say how grateful I am to be a mom?  :)  He nursed well, then conked out again - and when they determined he was awake enough to go home, we headed home - but first we had to reward ourselves with some Banbury Cross donuts.  It was rough for us too! 

Our neurologist had promised to call with results, and she did 4 days later.  Turns out he didn't have a stroke, but one or more of the new arteries by the ventricles hemorrhaged, visible on the MRI by hemosiderin staining, a stain left behind after a brain bleed, even after the blood is reabsorbed into the blood system.  The damage looked old, and these kind of injuries usually happen with preemies born prior to 34 weeks.  He was not a preemie.  40 weeks.  So we can tell it happened in utero, and sometime before he was born.  Even though it wasn't a stroke, the damage has been done, and what officially happened is a "perinatal periventricular hemorrhagic white matter injury," which has caused "spastic hemiparetic cerebral palsy."  And now some education for you -

-Paretic/paresis means weakened
-Hemiplegia/hemiparesis indicates the arm and leg on one side of the body is affected.
-Spastic (Pyramidal) – Spasticity implies increased muscle tone. Muscles continually contract, making limbs stiff, rigid, and resistant to flexing or relaxing. Reflexes can be exaggerated, while movements tend to be jerky and awkward. Often, the arms and legs are affected.
Spastic cerebral palsy is hypertonic and accounts for 70% to 80% of cerebral palsy cases.  
The stress on the body created by spasticity can result in associated conditions such as hip dislocation, scoliosis, and limb deformities. One particular concern is contracture, the constant contracting of muscles that results in painful joint deformities.

Hearing those words, "cerebral palsy" officially said by his doctor hit me kinda hard.  I obviously knew something was wrong, but to hear it so pronounced was difficult.  My son has a disability.  It will affect him his entire life.  It's hard to hear and hard to think about.  It's hard to see kids his age and younger crawling, cruising around furniture and walking!  I don't know when he'll walk, but doctor says 100% of her patients walk.  It just takes time and loads of help.  My heart already aches for him when someone at school makes fun of him.  I hurt thinking about all the times he'll stumble and fall, because his right leg doesn't work so well.  I'm sad to think that he'll struggle typing, piano will be difficult - and sports will be a challenge.  I already hurt for him if he hurts later - as described in the educational matter above.  It hurts.

HOWEVER...... good news!   A lot of people with CP (cerebral palsy) also struggle with learning disabilities, but I am so grateful that his hemorrhage was not near the cerebral cortex.  This means his cognitive abilities will be OK!  He may or may not be a wiz in math, but the CP isn't the cause if he struggles!  Good news!  This could be so much worse - and I'm so thankful for THIS trial.

I am comforted knowing he has hundreds of people who care about him and will work with him to strengthen his weakness.  I am comforted knowing that he has an amazing cheering squad of 3 older brothers and 1 older sister.  Those brothers will probably beat up the kids who would make fun of him, and that might be worth a bad ticket at school. ;)  Those siblings will also be there to pick him up when he falls, because he will.  They already help him with his therapy goals, and it's heart warming to see Baylor doing a sort of army crawl towards his siblings.  He gets where he wants to be. He is an amazing roller.  He can sit up by himself now.  He feeds himself with that left hand.  We have a lefty - never had one of those before!  This may limit him, but I fully expect and know we will have a returned missionary, college graduate, wonderful friend and son and a champion! We are doing this!

Over and over again, this scripture from The Book of Mormon has popped into my mind, and I know with the help of our Savior, Jesus Christ, both Baylor and I will be strengthened - physically, spiritually, emotionally.  WE CAN DO THIS!!!

"...if they humble themselves before me, and have faith in me, then will I make weak things become strong unto them."  Ether 12:27

No comments:

Post a Comment