• Katie Held

Holding on to The Hope of Glory - 8/8/18

While we may never know (here on earth) why some stories are different than others, we all know that each day is a blessing, and our ultimate instruction is to seek a purpose in our creator’s kingdom.

Something was different… Something was just a little different in comparison to our first. We noticed something was just a little bit different in the way our little man was[is] developing. As a parent, you rule out any major issues quite quickly. After birth, with the number of tests and information, it really drives home a feeling of comfort knowing we have a healthy and happy baby.

You know; the feeling of – YES, we got lucky. What a gift from God. One of each, a healthy beautiful girl, and a healthy beautiful baby boy.

Along the way, your worst nightmares haunt you. Those flash forward moments. Those stories of tragic accidents while on adventures in mountains, or with friends out late on the road, swimming in a pool, or the terrible and sudden loss of child from a drug overdose.

And…when you wake up, you can breathe again....

Over the last year, we’ve had some concerns about Ethan’s motor skill development. We noticed stiffness in his hips and weakness in his core that ultimately raised some questions in Ethan’s 2 and 3 year well appointments with his pediatrician. Each time, our questions and concerns were quickly dismissed. The average “normal” window for walking can be 8mo -24mo. Ethan was about 22mo. “He’s just a little delayed”.

I said pretty quickly - that’s no problem. He needs more protein. He needs more time, He needs more time at daddy boot camps; running the bases, climbing bleachers, flipping tires at the stadium field, ripping our shirts off and pounding our fists on our chests to summon more testosterone while grunting like gorillas and laughing as our voices echo back from the tall stadium walls.

Summer 2017

About two weeks ago, after pushing for (and demanding) an orthopedic referral we were finally at the doc. In the middle of some awkward gas[toots], Ethan passed all the tests and his bone and ligament structure looks great via x-ray. His hips are in place correctly, and no displacement during birth. No sign of cognitive issues. Awesome! “Just a little delayed in walking, which delays running. His body is bigger than an 18 month old who has been walking for 1 yr. SO, it’s just easier to see the nuances.”.  Ok great. Wonnafull!  I can’t wait to get back outside, and chase that little monkey around with that little mini football in his hand across the stadium 50 yrd line – field of dreams…

The next step was to start PT and really make sure we are helping him the best we can. I’m growing a little athlete here. We will do it all.  

Along with PT, the doctor solicited a neurology appt and explained that we wouldn’t need to, but just to dot our i’s and cross our T’s, Neurology can run some blood tests and just make sure nothing else is going on. We just wanted to rule everything out, but everything looked great and Ethan would no doubt have the same opportunity as his peers.

On Tuesday 8/7/18, at 11am we were back at Gillette Children’s in Minnetonka  - which is just a stone-throw from New Horizon Academy, and both Katie and I’s offices. Easy-peasy. Quick blood draw, and we’ll be off to celebrate with Jimmy Johns.

By 11:30 we were fighting his routine bowel movements. Again, right in the middle of gross motor skills testing. Awesome! What a dichotomy. 85% potty trained, in a pull up, “just-in-case” for the doc appt, he wants to hold it when we go to the bathroom, but as soon as we’re back in the rooms – twice over – he starts pushing again. WHY ON EARTH do they not have a step stool in the only bathroom at a Children’s clinic to help reach the sink? Thank God they skipped the automatic flushers! Those automatic flushers scare the SHIT out of our kids. Well- actually, it’s too bad they literally don’t!

Ok – So we sit down after the motor skills test and Dr. Cassie, very clinically, explains our feelings as parents to us – And I’m thinking, OK. I get it. She’s explaining that this is a normal case of parental paranoia. They see it all the time. Go Home and relax. Right? Except, that wasn’t the case. We went there to get a blood test. Oh, and now we’re hearing what that will test for and the correlations to different things that she could identify from watching Ethan for a few short minutes. However, she seemed optimistic. Basically, “just to be sure”.

After being directed to another medical center where they could run some very specific tests and the whole gamut of analysis - 2 hrs later - Ethan was watching the blood taken from his vein. Staring down the needle, just holding my finger. Not a whimper.  He even got a Band-Aid to match his bright yellow shirt. Pretty cool. He strutted all the way back the car as we first-bumped each other around every corner.  We proceeded to Target to pick a new toy…

That evening, I received a voicemail from the neurologist. She left her cell phone number and we coordinated a time where she could have her kids settled down with dinner on the table, and I could do the same.  Unfortunately, Katie was at a work conference downtown Minneapolis and I happen to take the kids to Papa and Mimi’s to have a spontaneous dinner with the cousins. She was very matter of fact and reviewed what we discussed in clinic again and then shifted to the test. The test showed that Ethan’s blood contains an elevated level of creatine kinase (CK). CK is a byproduct of muscle waste. When we exercise, our muscle breaks down and rebuilds. CK is elevated when the muscle breaks down. Normal range is 5-300 U/L. Above 2k is high. Body Builders and marathon runners can experience levels as high as 3-4k after traumatic training sessions.

Ethan’s CK levels were reading above 7,000. Dr. Cassie quickly let me know she really wanted to call and discuss the results because Dr. Richardson (the best around and “The Guy”) has an opening the next morning 8/8/18 at 11am in the Gillette Children’s St. Paul Location, and her extended team specializes in genetic testing and analysis for muscle disease and they would be available for a coordinated visit. I immediately took the appt and followed up with only one question. “Are you telling me this CK protein is only elevated if muscle tissue is decaying?” The answer was a stern - Yes. And followed up with some statistics.

All we know is that these levels don’t appear in small children without some form of muscle disease. The statistically safe path or probability of this being a non-life altering diagnosis was something like half of the 10% of the 10% who fall in this category; can sometimes see this lifestyle….but…. if… and sometimes…

Thank God I was in a safe place with Papa, Mimi, Aunti Andree, Corey, and the kids were distracted.

How was I going to tell Katie?

Ultimately, I’m realizing that writing is very therapeutic and could go on and on…  there will likely be more to come… I’ll try to wrap this up for now… - I’m in need of a workout!

On Wednesday, 8/8/18 they confirmed Ethan’s CK levels at 26,000 U/L and walked us through the narrow path of possibilities. Everything points to some form of muscular dystrophy and very likley duchenne muscular dystrophy (DMD).

Dr. Richardson’s first question was: What are the chances you two (Katie and I) are related?  It felt so good to laugh. But he was serious! Dismissing this as a probability, he then diverted to a story from an old Lone Star movie about two distant relatives falling in love…LOL.

The next step is to run genetic testing (4-8 weeks to get results) and identify the muscle groups this may impact. From there, this will just provide a small window of what we can expect moving forward.  Initially, we do know very likely he will continue to develop for a year a two and make forward progress with gross motor skill development. Specifically walking. There’s very high likelihood this will NOT impact his cognitive abilities whatsoever. We’ve been told wheelchair bound should be expected with a high probability by age 12 +/-4 yrs. Maybe sooner, maybe later…

For now, we need your prayers. We need to pray for a miracle only God can provide. Either supernatural or a technological breakthrough by doctors he’s prepared to understand this disease. We need this little man to be the outlier. We need him to be the exception. We already pray his story; one way or another, impacts thousands of lives as we continue to share. We’ve all been put here with a purpose. Katie and I are just so thankful for the support system around us with Friends and Family and are so blessed to be the best of friends as we navigate this journey of life. We will keep you posted as we find out more.


Jon and Katie

P.S. Katie and I are most certainly not related.

Attached:  Ethan showing off his cool Band-Aid telling me he's a tough guy on Tuesday

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