Progression and Regression (tissues may be needed)

Lennon is almost 2 1/2 now.  He was 11 months when we had his first major hospitalization.

There are days that I honestly can't remember him... you know... the way he was.

NOTHING anyone says can prepare you to grieve for a living child.  

I miss my son.

He was a happy, healthy, little guy before THIS happened... our first PICU stay.

We came home thinking it was just a bacterial infection and dehydration that caused his seizures. We learned that we could treat him with an anticonvulsant and that he might be able to wean off of it in a couple of years.

but then THIS happened... PICU stays 2 and 3... when he couldn't see ( we still don't know if it is true blindness or cortical visual impairment), his lactic acid levels were too high, and the seizure activity was located in new areas of his brain... and the doctors started thinking there had to be something more, so they gave us the name MELAS and started the process to see IF insurance would allow this test and prepared to petition the state medical board.  

We sent Lennon's blood samples in June to test for MELAS.  We knew that the process would take 10 to 12 weeks.  That's a long and scary wait, but we had a wonderfully uneventful summer.

I miss my son and the way 

he could still crawl around, knock over trash cans, and keep going back for one more toss from Dad. (Spare us both any negative comments about that.)  

For perspective, the video with Dad is from less than a year ago.

  

 

In mid-September of last year, we were beginning the process of submitting Mom and Dad's DNA to perform a variance analysis since the typical MELAS genes were labeled

Variables of Unknown Significance.

In October, we had been nearly 5 months seizure free.

Then came PICU stay number 4... and we were STILL WAITING for conclusive genetic test results.  

Fall of 2017 was difficult, watching him get thinner and weaker, but not really knowing why or how to help.  

After what seemed like an eternity, we received his test results not long before Christmas.  

CARS2

Not even the specialists in Wichita could tell us what we might expect since only 3 children were documented as having the genetic mutation prior to Lennon.

And then waking up 364 days after his first hospitalization with more seizures... PICU stay 5

     

Choosing to take a trip to Texas in March to celebrate his birthday, partly because we weren't sure if we would get to celebrate another one...

  

Driving to Denver to see the specialists who worked with the first child diagnosed with CARS2 and following their recommendation to have a g-tube placement surgery to fight his failure to thrive (AKA him not gaining weight for nearly a year) only to end up in the PICU for real after 2 days at home.  PICU stay 6/7 depending on whether you count his post-surgery stay.

                           

Coming home and wondering if we were ever going to hear his voice again, if he would ever swallow again, what it was going to be like now that he needed 'round the clock care including skilled nursing.

Not taking ANY videos on my phone for over a month and VERY FEW pictures.

Until I could finally accept our new normal.

***

Being blessed by time with family at the end of July.

       

Only to be hospitalized again the day we were supposed to come home from our short vacation in Wichita... PICU 7/8

But here is our champ, our beloved, showing everyone what he's made of!

He is the light of our lives and "the cutest baby ever" according to his siblings.

   

I may never actually post this... it may stay a draft forever.

Usually when you hear words like progression or progressive, you think of moving forward in a positive way, but progressive movement disorder in itself is not a positive experience. 

With the progress of the disease comes the regression of its host.  

As the mitochondrial disease moved forward, Lennon's abilities moved backward.  

Yet he continues to impress us all. 

It just means that our celebrations are different now because he is different now.

I Love Lennon!

I miss his cry.

I miss his laugh.

I miss the messes he made.

I miss hearing him say my name...

and Christian, and Bubba, and DAD!, and Ha-na Ha-na Ha-na, duga duga duga, and COOKIE!

I miss watching him enjoy his food, smacking his lips and shoving it into his mouth with both hands.

I miss him constantly being underfoot.

I miss him crawling into my lap.

I miss the TV or computer going off and having to plug the router back in because he'd crawled behind the couch and disconnected the WiFi.

I miss him speeding down the hallway to the toilet before I could even walk to the kitchen and hearing him spashing in the water... or dropping toothbrushes in. (YUCK!)

I miss the sound of the trash can falling over and dishes being thrown from the diswasher.

I miss his hugs and kisses when he had better control of his body.

I love that he still giggles.
I love the way he yawns. (That hasn't changed a bit!)
I love sharing new (old) music with him.
I love the snuggles.
I love that he loves his family.
I love the way he still plays with everyone.
I love how hard he works.

But I (not so) secretly long for the little boy who was... even though now he is so much more.  

My baby, my fighter, my beloved, 

Lennon.