Jimmy’s Story

04/09/2024

Please take a second & look at the stickers created for Jimmy! She will also be adding more over the next couple days

03/22/2024

Does anyone have any of this formula they are no longer in use of? Jimmy has been approved for a A&D wavier but insurance hasn’t started yet & we only have a couple weeks of formula left & it is kinda expensive. We would greatly appreciate it!

03/15/2024

Update after our St Jude visit

We seen Neurology, they believe we need to do another longer EEG as Jimmy has been having seizures more often.

We seen a clinical pharmacist & they did some research labs last time we were there & we found out Jimmys body is a poor metabolizer of NSAIDS, & even some families of pain medications.

Jimmy had a procedure done to resize his Gtube & burn off excess skin around his Gtube site.

After his MRI his blood sugar started dropping & we fought with it for a while to get it to a stable point.

Jimmys MRI came back good! No tumor regrowth. We have been moved to appointments every 6 months.

Overall it was good appointments! As always we continue to ask for prayers for our sweet boy. ❤️

03/10/2024

I haven’t posted a good update in a while so here it goes.

Jimmy has been having a lot of glucose problems, so he’s been on a CGM (Continuous Glucose Monitor) for a few months now. He was also diagnosed with Ketotic Hypoglycemia back in December & they are thinking he may even have a Storage processing disorder as his labs are showing his body is burning through stored sugars, & proteins too fast.

Jimmys GI changed his feeds & he is now on tube feeds 24 hours a day as when we stop them even for 5 minutes his glucose starts tanking.

Over the last few months Jimmy has also been having more seizures so we are going to be doing another EEG soon.

Jimmy’s Developmental Pediatrician believes Jimmy may have Autism so we are now awaiting an evaluation.

We also leave for St Jude this week so prayers that his scans come back good! ❤️

12/23/2023

Jimmy shirts came in today! I will be processing them after Christmas & reaching out to everyone who ordered ❤️

11/16/2023

Update on Jimmy post St Jude appointment.

Jimmy’s scan came back good! He still has scar tissue (which is expected). We seen lots of people as always, met some great people as always! They moved our visits to every 4 months instead of every 3 months. Since Jimmy is still having seizures a year post op at his next visit they are having us see a neurologist & do a EEG. As always keep praying for my boy bc these trips are rough on him but oh so necessary ❤️

11/15/2023

Our sweet boy is current in PACU after his scan! We should know more tomorrow after we see Dr. Klimo send all the prayers/good vibes our way ❤️

09/06/2023

If you would still like a shirt please comment or let Leah know! If you haven’t paid please reach out so you can do so. Payment is due before shirts are ordered.

So we decided to do new shirts! If you would like one please send Leah a message or comment on this post. Payment can be sent through Venmo, PayPal or Cash.
Youth-XL $18
2x-4x $20
Hoodies $32 (2x-4x $34)

We also created a gofundme or anyone who prefers that & I will post that link.

https://gofund.me/2cba43a3

We did make Jimmy his own Venmo for donations, it has been frozen until they can verify my identity. But hopefully that will be cleared up by next week.

Thank you so much everyone!

08/31/2023

So we decided to do new shirts! If you would like one please send Leah a message or comment on this post. Payment can be sent through Venmo, PayPal or Cash.
Youth-XL $18
2x-4x $20
Hoodies $32 (2x-4x $34)

We also created a gofundme or anyone who prefers that & I will post that link.

https://gofund.me/2cba43a3

We did make Jimmy his own Venmo for donations, it has been frozen until they can verify my identity. But hopefully that will be cleared up by next week.

Thank you so much everyone!

08/28/2023

Jimmy’s insurance is being canceled. & we are in the process trying to get him a Medicaid wavier. With that being said Jimmy’s medical supply bill every month for his Gtube stuff is a around $3,500 & his medication is a little over $700.

We are looking to do another fundraiser to help while me are waiting for the wavier. I’m looking to see what kind of fundraiser everyone would be interested in. New shirts? Gofundme? Or something else.

We appreciate everything everyone has helped us with so far & we know Jimmy does too. 🩷

08/10/2023

Happy Tubieversery!

One year ago today Jimmy got his Gtube placed & as much as I wish he didn’t need it he does. & I am beyond thankful for this little button bc it has taken so much stress away from me. Knowing that Jimmy is 100% going to get the food & nutrients he needs, that he has finally started gaining weight! Maybe one day Jimmy won’t need a Gtube for for now he does & that’s okay! ❤️