John's Journey

03/12/2026

Happy 2nd birthday, sweet John!

We can't believe you are 2! Life with you is not what we imagined, but you are what our family needed, and you are perfect.

Thank you for teaching us what it means to love and serve others, and for teaching us the unconditional value and sanctity of human life.

There were many times this past year that I did not believe we would make it this far. Praise the Lord for His sustaining hand, and may He give you many more healthy years of life.

You are very loved, sweet baby. Happy birthday!

03/11/2026

John's PT Kelli brought him a gift for his birthday today... "Happy Birthday, Turtle!"

She wrote on the inside cover "John, you've stolen my heart! Love, Kelli"

And not only for John, but she brought a gift for Mark as well: a new book from his favorite series!

Our team is truly the best. Our PT and nurses are not just that. They are our friends.

Thank you, Kelli! John loves you, too. ❤️

03/10/2026

Happy Tuesday, friends!

We cannot believe our sweet John is turning two in just TWO days!

Today was a busy morning for our happy John! Both weekly Vpriv infusion with nurse Kaitlyn, AND physical therapy with PT Kelli! John's two most favorite team members in one day. ❤️ They sure wore him out!

I forgot to get a picture during PT, but John was ADORABLE and working hard! He even smiled big when we tickled him. 🥰 John's medical team increased his dose just a little yesterday (1 mg increase), and such a small amount has made a BIG difference! It's not perfect by any means, but he isn't in pain like he was even just yesterday morning. He's been able to sleep more soundly, and happier when he is awake. We started at the lowest dose of morphine possible a few months ago, so there is plenty of room to increase as needed. We see neurology in clinic later this month, and palliative will be joining part of that appointment so that we can all discuss pain solutions moving forward. It sounds like part of the solution might be to increase either the gabapentin or pregabalin to treat the nerve pain more effectively.

We always appreciate prayer for wisdom in making these decisions!

$2 Tuesday ❤️

PayPal:
Venmo:
CashApp: $JohnsGaucherJourney
Https://gofund.me/ec844d77

❤️❤️❤️

03/09/2026

Big brother helped give John a bath this evening. A complicated production! But resulting in a very clean, strawberry-scented baby. 🛁

Yes, he is too big for this baby tub. Our rehab supply company is bringing by sample bath chairs for us to try out tomorrow morning. Its usually been six weeks between ordering and the item arriving. You all can pray that insurance approves quickly!

Please continue to pray that we would be able to control John's pain, and that he would get deep, refreshing sleep tonight.

03/08/2026

Please share what has worked for eczema. We have tried lots of different lotions and creams, prescription, over the counter, and homemade.

So please comment what's worked for you or your child!

And please pray that we can get this eczema under control! John has had it in varying degrees his entire life.
....and peep those tiny red curls 😍

03/07/2026

Our John slept right through his first tornado sirens last night! They didn't go off until it was far too late to leave the house to go to our town's storm shelter, which made me very nervous as our home was not built to withstand storms, and we do not have a basement. We did what we could and huddled the kids into our most interior room with blankets and pillows. And thankfully the tornado passed right over our area! Though I hear that some areas immediately surrounding us took a little damage.

One of the most important things is we didn't lose power. All of John's medical equipment has very limited battery life, so any time we lose power is unfortunately a trip to Children's Mercy. John can't survive without this equipment.

John finished the Clobazam (Onfi) completely recently, and while we have seen significant progress, some side effects remain. hypersalivation and pain are the worst of it. We were not expecting side effects to last this long after the last dose. I have messaged and called neurology over the past few days, but have not been able to make contact yet. I am assuming that since Children's Mercy is undergoing a huge change to their phone and portal systems, that it just needs some time to catch up. In the meantime, John is maxing out his morphine at every 4 hours to stay comfortable. I'm okay with giving it if he needs it since it's not sedating him, but of course I'd like to fix this for him so he doesn't need constant pain meds.

And we cannot believe our sweet John is turning TWO in 5 days!!!

03/05/2026

Hi, it's Rebekah (Julie's friend) here! Did you know sweet John is turning 2 years old in just ONE WEEK?! So amazing, right?? This is a HUGE milestone for him, after all that he and his family have been through--so please join us in celebrating and honoring him and his family! Let's make this birthday extra special!!! I started a GoFundMe to provide a wonderful GIFT--both monetary and tangible--and every contribution goes a long way to blessing them!! Thank you in advance and may the Lord bless your generosity!

Hi everyone! Some of you may have already heard about precious John and his f… Rebekah Womble needs your support for Celebrating John’s 2nd Birthday Milestone

03/05/2026

John is DISCHARGED! 🙌🏻

The few hours we spent in the PICU recovering today were a little frustrating. We had an attending physician who kept moving the goalposts even though John was doing incredible, and meeting every requirement.

A nurse practitioner who has cared for John a lot in the past came to assess him, and agreed with us that it was not reasonable for the attending to keep us there. So she signed discharge orders for us herself! 🩷

We thank you all for praying for our John. Very thankful to be going home this evening!

03/04/2026

John is in the PICU for recovery!

His anesthesiologists did not even need to intubate as planned! He was doing so great on his own bipap they kept him on it for the whole procedure.

I hope this means there is a good chance of his coming home today, as extubation was the biggest worry!

The ABR did find Auditory Neuropathy, so John will be getting either hearing aids or a cochlear implant soon, pending outpatient testing with his new audiologist that we are adding to the team!

03/04/2026

John is back in surgery now!

Please pray he does amazing during his procedures and with extubation, which will be attempted immediately after surgery is over.

A PICU room is always ordered for him after anesthesia, but last time he got to go home the same day, and we would love for that to happen this time, too!

03/03/2026

Infusion Day!

We are checking in tomorrow morning to the surgery clinic for John's new ear tubes and ABR hearing test! While John was able to have twilight sedation last time he got ear tubes, and got to go home the same day, he has to be under general anesthesia and intubated this time because of the ABR. (The ABR will help us determine the need for a cochlear implant.)

We cannot yet estimate how long we will be admitted until John comes out of the OR. Our ENT has ordered a PICU bed as always, because he is high risk for adverse reaction to anesthesia. Our doctors are hoping John will go home same day again, but everything depends on how extubation goes after surgery.

Today's $2 Tuesday is helping to cover pay my husband will lose while John is admitted (and mine as well, as I do not get paid for caregiving while we are inpatient). ❤️❤️❤️

Https://gofund.me/ec844d77

PayPal:

Venmo:

CashApp: $JohnsGaucherJourney

03/02/2026

PT this morning!

This is the first time since October that John has been in the stander! Between back to back illnesses in October and November, traveling to DC for appointments, and then the Clobazam and the many problems that caused, we have not been willing to force John into his equipment. Today it was 15 minutes from the time we started loading him to the time he was out!

So proud of our John!