John's Journey

04/30/2026

This afternoon John had an appointment with dermatology to establish care. His skin is very sensitive, and he has had off and on (mostly on) rashes and skin issues since he was two days old, as a reaction to his Vit K shot.

Doctor does see a lot of eczema and gave us some suggestions for that, but said there are a few other things going on that she can't identify right now. She did skin scraping, and will call us in about two weeks with those culture results.

On the way home, we were t-boned on our driver side door. We are very shaken up and sore, but thankful to the Lord for His mercy. It could have been so much worse. Our car is not drivable so was towed.
The other driver fared even better in body and vehicle, and drove away safely when released.

Pray that this process would go smoothly, and pray that insurance pays for a rental vehicle, and pray ours can be repaired in a timely manner, at a reasonable cost. Thankfully we do not have more medical appointments until mid-May, but my husband cannot get to work until we have either a rental, or our car is repaired.

Please also pray that God will provide the finances we need for this, whatever the cost will be. This was a terrible time less than two months out from a big trip to DC.

We are so tired. It is one thing after another.

04/28/2026

Happy Tuesday, friends! This picture is from last night, when John was happy for a few minutes.

🐣 John had his weekly enzyme infusion this morning!

🐰 Please be praying for him, as he is being treated for an ear infection (left ear) since last night. Right now we are just using antibiotic ear drops, but if it doesn't look like its improving by morning, our pediatrician will need to look at it and we'll have to consider switching to an oral antibiotic.

🐣 Please don't forget about John's new shirts! They are SO CUTE and no one has grabbed one yet! There are over six thousand friends who follow John's Journey, and we only need 17 of you for these to go to print! There are 21 days left of this fundraiser. Go get one!!

https://www.customink.com/fundraising/johns_journey?utm_campaign=mobile-campaign-page-share&utm_content=johns_journey&utm_medium=social&utm_source=copy-link

🐰 Bracelets!! $5 each, message us with your address and payment method! Thank you to everyone who has been grabbing these so far!

🐣 7 weeks until we leave for DC! This is a reminder that all $2 Tuesday donations go directly toward this upcoming trip to see John's geneticist and immunologist in DC, and everything is so appreciated to help relieve the financial burden of these trips. 🥰

🐰 $2 Tuesday!!

PayPal:

Venmo:

CashApp: $JohnsGaucherJourney

Https://gofund.me/ec844d77

04/26/2026

Sunday smiles, IG infusion, and thunderstorms this evening! ⛈️

04/24/2026

25 days left to order!

https://www.customink.com/fundraising/johns_journey?utm_campaign=mobile-campaign-page-share&utm_content=johns_journey&utm_medium=social&utm_source=copy-link

04/22/2026

BRACELETS STILL AVAILABLE! 💛 We have 25 more available!

💙💙💙

Only $5 shipped per bracelet!

If you'd like one (or two or three!), you can comment here or message us with the number of bracelets you'd like, and your mailing address!

We will plan to ship bracelets out every Monday!

Please help us fund our upcoming medical travels to DC, Dallas, and Phoenix this summer!! 🙌🏻

💙💙💙

A few options to pay:

PayPal:

Venmo:

CashApp: $JohnsGaucherJourney

💙💙💙

04/22/2026

https://gofund.me/68ffb85ab https://www.caringbridge.org/site/8183419c-a51a-11f0-bb11-4f413c8b0edf?utm_source=website_share&utm_medium=share_button&utm_term=&utm_content=link_share_button&utm_campaign=private_home_page

04/22/2026

Hello friends!

In an effort to raise funds for medical travel this summer and fall, we are rolling out another round of t-shirts!

These are soft, cute, and help support our family!

This fundraiser will be open for 4 weeks, and you will receive your shirt approx 2 weeks after that! We need at least 17 shirt orders to meet the minimum print requirements. If the minimum is not met, your order will be refunded to your original payment method.

Our goal is to sell 50!

If you can, please support our family by purchasing one of these shirts, and share with others! Every dollar counts. I promise nothing goes unnoticed!

Thank you all so much for your continued encouragement and support!

https://www.customink.com/fundraising/johns_journey?utm_campaign=desktop-post-launch-v3&utm_content=johns_journey&utm_medium=social&utm_source=copy-link

https://gofund.me/68ffb85ab https://www.caringbridge.org/site/8183419c-a51a-11f0-bb11-4f413c8b0edf?utm_source=website_share&utm_medium=share_button&utm_term=&utm_content=link_share_button&utm_campaign=private_home_page

04/21/2026

Happy Tuesday!

Infusion Day! 💪🏻

8 weeks until we leave for DC!! All $2 Tuesdays until we leave will be going towards this.

Looking forward to the rest of this year, we have our appointments in DC at the end of June, an appointment with a new Gaucher specialist in Dallas in August, and a Gaucher conference in Phoenix in October.

$2 Tuesday!

PayPal:

Venmo:

CashApp: $JohnsGaucherJourney

Gofund.me/ec844d77

04/21/2026

Friends,

Please keep Baker in your prayers. He is the four year old son of a friend I had in high school, and he's fighting rhabdomyosarcoma.

Follow their page, Brave like Baker for updates.

Chemo week 10🎗️

We have 2 chemos everyday this week.
Tomorrow we have MRI then chemo. We are really praying for more answers, know where the mass is ect. I NEED ANSWERS
Our consult for radiation got moved to Wednesday. We really needed the MRI before the consult so this is perfect. They were talking about admitting him to ensure we got this MRI THIS week because they are swamped they said, but we were able to get scheduled while in clinics today.

ANC was great. In the thousands.
Hemoglobin was a 8 exactly. He will need a transfusion this week, but hoping he can make it till Thursday.

💛Prayer requests:
•MRI results
•His hemoglobin stays above 7 for at least 2 days
•He stays healthy
•Minimal side effects this week. This is a long week
•Radiation consult goes smoothly

He asked today when we got in the car when he’d be better. I just had to swollow tears down and say “soon baby” 😭💛

04/17/2026

Many parents of special needs children provide ICU level care in our homes. We are attentive to our children's needs around the clock, and put in longer hours than any professional healthcare worker.
We manage medication, schedules, and can list all our child's meds, doses, and what the medicine is meant to treat, at the drop of a hat.
We monitor our children closely overnight, ready to jump into action at every alarm.
We monitor for seizures and treat them.
We are constantly suctioning and clearing their airways.
We attend weekly therapies and appointments, advocating fiercely for our sweet children because no one else will.
We are trained and prepared to respond to codes. And some of us have needed to many times, something no parent should have to experience with their child.
Only we know how to calm our child's anxiety.
Only we know their favorite story, nature sound, and song.
We spend hours and hours every week researching our child's condition, praying for some answer we might have missed.
We spend countless hours on the phone with doctors and insurance, fighting for life-saving treatment.
We know more about our child's rare disease than many doctors, and often meet doctors who have never even heard of it.
And so much more.
Every state needs to pay parent caregivers, for ALL of the nursing hours their child is given. It is ridiculous that parents are capped at 40 hours a week, but if we bring a nurse into our home, they are not capped.
A nurse will not and cannot provide the care that parents provide.
Special needs families are already struggling financially. If the state won't start paying us a fair wage for all our child's nursing hours, then we won't have a way to provide financial stability for our families. Parents of special needs children who require intense, around the clock care, cannot hold a typical job.
Public services for special needs families is NOT the place for our government to cut costs.
This is a bipartisan issue, beneficial for all. It is much cheaper to pay parents a fair wage to be a full time caregiver to their disabled child, than it is to institutionalize our children.
And it keeps families together, which is what all children need and deserve.

04/17/2026

Audiology for John today!

Today was for a hearing evaluation following up from his recent diagnosis of Auditory Neuropathy. In summary: John's behavioral hearing test today was inconclusive. He did not respond to speech or tonal stimuli in a way that his doctor believed was consistent enough to make a diagnosis.

Audiologist wants to follow up in 3 to 6 months for another behavioral hearing test.

This is not a surprise to us. We did not believe we would learn very much today, and we don't believe that John has major hearing concerns at this time.