A Grateful Heart

10/28/2026

Jackson starts out patient rehabilitation today! Praying this week his body is ready for his eval and therapies! Some areas we see needing progress are his stamina, overall strength, and a solution to standing in place for more than a few minutes. I dont understand what happens when he stands still, but it seems like the pressure in his legs builds up and he has to sit. He says "the blood builds up". Hoping they understand and have some suggestions for him.
Jackson has video of himself "documenting" all his muscles. He took it just a few hours before he was burned. He has goals to get back to where he was. One day at a time!
Im still struggling to adapt to no bandages. He seemed a lot safer when I had to bundle him all in each day. His new skin is not very durable yet.
Overall he is doing great and if I haven't said it enough, it is so good to be all under one roof.

10/24/2026

We met this sweet girl as a baby and were super excited to sponsor her when we heard she was running a race for ALS!! Our family thanks you Courtney!!!

https://www.facebook.com/share/1CXkqHwWmU/

10/24/2026

Another young man home! I had been reading about this accident before Jackson had been burned.
https://www.facebook.com/share/p/1GsugpiJkn/

It popped back up on my phone after Jacksons accident. Its crazy how you can feel another moms heart so well who is miles away and a complete stranger.

Prayers for them for those first "home" days. They are tough!

12-year-old Case Higgins is finally heading home after suffering severe burns in a fiery race car crash at I-44 Speedway in Oklahoma City.

The young racer from Kansas suffered burns to 48% of his body when his car flipped and caught fire in July.

After 65 days in the hospital, multiple surgeries, skin grafts and another month of rehabilitation at Bethany Children's Health Center, Case has reached a major milestone in his recovery.

His journey has inspired support from the racing community, and now he's taking the next step: going home to his family.

Read more about Case's incredible recovery ⬇️

10/21/2026

Yesterday we got great news at Jacksons check up. He is d.o.n.e. with his bandages! He met with his surgeon and he said "its is time for your skin to be skin". Progressively Jackson will get to expose his skin to the environment. This is on his timing.

The surgeon was even contemplating just how necessary any compression garments will be. Originally he was told 23 hours a day for a year. The surgeon thinks his scars are flat enough he may not need them for that duration. SO, we still had custom measurements taken for a compression suit to be made and Jackson is still choosing to wear his current compression sleeves and legs for now but when we recheck in a month he may advise they aren't needed at all.
There are a few things in play here. He still needs abundant moisturization on over half of his body and the sleeves and legs help contain that. Jackson's skin has never rubbed against clothing so that was overwhelming leaving the hospital yesterday. He is also just getting out and about more so the possibility of bumping into things and tearing his new skin is higher so he will wear them for comfort and peace of mind as often as he would like for now.

The other piece to this is temperature control. With burns of his size thermal regulation is a whole thing. He gets real hot and then real cold and not a lot of in between. With cooler temperatures coming he thinks he will want his compression garments on for awhile.

Jackson had a few spots where skin cells have grown too much! Do you know how they stop the overgrowth of cells when that happens? They re- burn the area!
I didnt know this had been done but they re-burned a few sites yesterday. It seemed kind of terrible.

PT/OT has still not started. This was a delay today on our part. We have to figure out some struggles with sleeping so he can have effective therapy.
He will try again next Wednesday.

Im kind of in disbelief that he won't be so wrapped up! Shocked really! Jackson said we will have so much less "quality time" together now. I think thats so sweet but that we also could find some other quality things to do together. It is kind of sad though because although that was "forced" time together, it was consistent. I know as he feels better and better we won't have that volume of time together anymore. To expect him to keep spending 3 hours a day with me one on one is probably a bit excessive even for this optimstic soul.

Thanks for praying us through our days!

10/20/2026

Ok prayerful friends, Tuesday morning we head back to Loyola for Jax clinic appointment. I am so unsettled about this! I guess I just don't know how it is going to go. Will they say his skin is looking good? Will they see something we don't? I am not really nervous because they will have solutions for any problems, but I just can't quiet my head because I am so unsure if things are going well or not.

Also prayers of thanks that I am feeling better. I had a horrible headache since Wednesday that finally got better today. I tested negative for all the viral things so I hope at this point it just stays away.

Wednesday starts PT and OT after last week's insurance issues. Praying that his therapists are good fits for him.

It's a busy week ahead!

10/19/2026

Hang on to these words for when you need them. It is exactly how we have made it through and we believe God provided all those tiny blessings and kept our eyes open to them. Honestly just the little things. I had a grade school friend send me the softest blanket that became one of my favorite things when I lived at the McDonald house, those conversations with late night shuttle drivers, a sunrise and a sunset, right now it is dinner after a full day of appointments, work, bandages, etc.being together in one room...

https://www.facebook.com/share/v/1cPa6AiWCw/

10/19/2026

A glimpse of home, its what I missed so much.
The reality check:
They are laughing at Dave. Even Maisy is looking at him.
Jackson is stuck in this position now!

10/15/2026

Today was a crummy day. I need a re focus before bed so I'll end with some gratitude.

Since the very beginning we have said how grateful we were for Jacksons non burned feet. They were completely untouched by the fire. This allowed him to be mobile right when they wanted him to get moving without any extra pain in his feet.

Even on a rough day this still catches my eye and causes me to pause when I see them.

So today, as I look for all the good, I'll share his feet and the drastically unburned nature of them!
Thank you God for all the ways you protected Jackson that night.

Here is a picture of his feet from this evening. You can also see the progress on his legs. Left leg was grafted in one of the first surgeries. Right leg grafted in his final surgery just 2 weeks ago. The key here is it is ALL his own skin. Again, thank you Jesus.

Also, one other thing making me smile is how much my mom commented on Jackson's feet. She did not like them. She said he had Fred Flintstone feet (wide with wide toes). It also made her crazy how much he ran around barefoot when he was little. Somehow she would always seem to comment on them. Oh mom, I am glad you have the peace of heaven now because you would be so stressed by all of this!

If you're looking for good work boots, we are big fans of the Brunt brand now!

10/14/2026

Jackson starts his out -patient PT and OT Wednesday morning at 830a. Pray for a great team and an accurate assessment of his needs.

We also have a very specific need for one of his bandages called "veil". He is out of it and we had to come up with a compromise while we wait. I have some on order with no real idea of when it will arrive. I cannot find any locally. Pray we are keeping the wounds covered safely and effectively with our coverage and that it is comfortable enough for Jackson to move around. This is a layer that prevents the other coverings from sticking to his new grafts.

I have a call in to the Loyola team as well to see if they can help him in the meantime.

10/13/2026

I've been needing to update! Jackson has been home 5 days now. He is doing pretty well. He is moving slower than I had imagined and taking it easy. He is just a few weeks out from his last surgery so he is still on that recovery as well as the big change of being home without all the round the clock care.

Bath and dressing change is still taking over 2 hours a day. Most days it is 3 hours. Today there was improvement so Im hopeful for tomorrow.
That's a lot to add into anyone's day.

There is definitely a noticeable difference in his energy and mood when he is up and about too much.

A friend posted this picture today and I think it helped me to just see the vast amount of change and challenges we have had in one year. I spend a lot of time zoomed in on the thing in front of me at any given time. Since we have been home there have been moments where the world zooms back out and to be honest I struggle!
When I saw this picture and paused to consider everything that God has brought us through in 12 months it kind of takes my breath.

My mom passed away October 2nd. The next week was her funeral and the next was my birthday and Jacob and Brittanys wedding celebration. We had one week where I was home and thought I would begin to sit with the grief of losing my mom and Dave fell for the first time.

That fall began a series of appointments to "be safe" and "make sure everything was ok" and instead each appointment uncovered just another little piece of something being off.

It was within a month that we first heard ALS. This was just before Thanksgiving, my first without parents. It felt like I was moving around in a world that was not mine. I still looked like me and everyone around me was still there but I was just not myself any longer. We did this through Christmas and into Spring. Lots and lots of tests. Tests to confirm the previous test. Weekly calls to see if we could get downtown any faster than the 4 month wait they first gave us. Our local neuro had written on a prescription pad. Diagnosis ALS, referral to a Chicago hospital. He handed it to us and said it was "too rare" of a disease to get care here.

Somewhere in those months after Christmas our kids had had enough of our vague answers for what they could see happening with their own eyes. We finally told them Dave was confirmed to have a "motor neuron disease" expecting them to maybe settle having some type of answer, but Addyson shot back "motor neuron like ALS?" and then they fully knew. There had been enough people bringing awareness for ALS that they were somewhat familiar via tik tok and youtube.

I have said it here before, but the first thing doctors and support groups told us was "travel".
We vacationed the heck out of this summer. We really thought we were making memories for the kids with Dave. I really believe now we were being filled and fueled to survive August through October!!

We dont know whats around the corner, none of us do, but this year we have learned to do each day the best way we can. They aren't all good ones, but they can be done well with God's help.

We are still settling into home and everyone's needs being met well, but it is so so good to all be in one place. God is meeting every need for each day and focusing there is all we need.