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Pray for Brady After strokes, tests and brain biopsy, Brady has a rare vasculitis in his brain. Please pray!

Well, we only thought the madness was settling down. Spoke with the GI dr.. they are pushing the Crohns diagnosis.. I st...
08/01/2026

Well, we only thought the madness was settling down.

Spoke with the GI dr.. they are pushing the Crohns diagnosis.. I still don't understand how they can justify this with both the lab and the bloodwork saying it cannot be confirmed.. so I guess these days we just make up our minds as doctors and stick to it even with 2 different tests say otherwise?!?

Frustration doesn't even begin to express my feelings right now.

I'd post the nonsense that the doctors have relayed to me and maybe I will in the comments...I don't know. I'm questioned the competency of it all. I'm questioning if it's even ok to just push a doc on someone without solid evidence.... I mean if we are just going off visual, then I'd say I could potentially diagnose a ton of people to based on looks. 🙄

Anyhow, in addition to that conversation, out of blue Brady had another seizure on Wednesday. Contacted the neurologist and they've upped one of his seizure meds. Even after all this, Brady remains hopeful that he doesn't have another and stays relatively positive given the crap he's been through since he was 10.

We will be retuning to Cincinnati again this week. He will have several appointments again this month including his Botox injections.

Right now he's looking forward to turning 16, and so that is what we are going to focus on!

❤️

A small update on our guy. He's feeling sooooo much better being on all the new medicine. He's still on a steroid and 2 ...
07/22/2026

A small update on our guy. He's feeling sooooo much better being on all the new medicine.

He's still on a steroid and 2 antibiotics, in addition to all the other new meds he takes. The amount is actually crazy.

He's now doing the Ig immunotherapy weekly. And the GI doctor is wanting to put him on Crohns medicine (another story for another time) even though the lab says he doesn't have crohns. For now, we have another month of steroids until it's figured out what is going to happen to keep his colon happy. 🙂

We have several more appointments coming up once again in both Cincinnati and Louisville with various doctors and for various procedures and tests. Hopefully we can squeeze in a day for the state fair between appointments and work!

He's still down about 5 pounds but we suspect between the steroids and the nutritional drinks he has to have twice a day (that gives him an extra 1k calories a day) he will surpass his pre illness weight in no time. 🤞🏼

Just today I was talking to his therapist about the progress we see just I. The last 2 weeks. He was really running on fumes before. They are seeing great movement with PT and his speech is clearing up again! He would really like to get back to youth group and karate! 👀

His energy levels are returning and we've not had a single scare since early on our vacation (about a week after his last hospital stay)

I know I say this all the time, but he's a much stronger person than I am. He pushes through the difficult things, the embarrassing things, the painful things and the not fun things (like being on a crazy diet that is was stupid restrictive)

Once again, Brady wins and we couldn't be more proud of him if we tried!

07/05/2026

Long (ish) post:

Brady spent 5 days in the hospital, before coming home. The physician was not happy about us leaving but he always does better at home.

We had the absolute worst experience of experiences in Cincinnati. The room was filthy, quite literally and house keeping was non existant cor the first 3 days. We had meal trays left for over 24 hours, trash not taken out, linens overflowing, nursing staff not picking up their dirty gloves, etc.

Brady's procedures showed lots of inflammation, ulcers upon ulcers. We were told this was crohns, but then the lab come back and said it was NOT crohns. The doctor had another lab person take a look and they too said it was NOT crohns. She still thinks it's crohns and plans to put him on medication to treat that. For now though he's on a steroid and 3 antibiotics.

He is feeling better, has gained 2 pounds but is still not completely in the clear for the refeeding issue. His stomach pains are lesser than they have been in 6 months, his other GI symptoms are improving slowly. He had a bit of a scare on Thursday night, but quickly recovered. It's very important we monitor him often for dehydration, increased BP and HR. There are signs of refeed syndrome. Unfortunately they can turn bad very quickly.

He remains his hopeful positive self, even though the hits keep coming. He is even more immune suppressed than he was before.

We were able to get out last night and watch the fireworks. The ladies at the LST where we have a membership were very kind to let him go through the line first to get his food to reduce risk of getting something from others. If you've bnever been to visit the local LST, you really should.

Today, we are headed south. We have his meds, his infusions, and lots of Liquid IV and the Kate Farms nutritional drinks he has to supplement his caloric intake with. We have a plan of which hospital we have to go to should he need one while in Florida. Time away will be healthy and hopefully healing for him.

As always, we appreciate all the prayers, and the well wishes! We would really love to get to the absolute bottom of why Brady's is consistently being affected with an autoimmune issue... maybe someday. Currently looking for some top physicians who are good at diagnosing undiagnosed medical issues.

PRAYER IS REAL!!! Don’t worry about anything. Instead, pray about everything. Tell God what you need and thank him for a...
06/25/2026

PRAYER IS REAL!!!

Don’t worry about anything. Instead, pray about everything. Tell God what you need and thank him for all he has done. Phil. 4:6

Brady is heading home. His levels did not drop. He has to stay closely monitored. As they can still drop. He will have a very long recovery ahead. So please keep him in your prayers. Those of you that personally know Brady. His recovery will be much greater at home. Surrounded by family, all of you, his furry friends and that unforgettable love he has.

Thank all of you. Praise God!! ❤️🙌🏽🙏🏽

06/25/2026

🙏Brady did receive an oral dose of phosphate this evening.

⬇️Keep reading..

💉He's also on 2 iv antibiotics and an iv steroid. These will become oral upon discharge from the hospital.

💊He's also on an oral antibiotics.

🤨We don't have any great answers. They said it was Crohn's, but the lab says it's not. The lab thinks colitis from an underlying infection. The GI doctor still is pushing for Crohn's diagnosis. The very specific prayer we need tonight is

🌟1. His levels of phosphate, potassium and magnesium will stay stable or even increase. Please pray that very specifically. Providing it's stable, they will let us leave tomorrow with a very strict schedule for medicines and future appointments. The goal is to decrease diarrhea and severe pain as well as increase his weight. He currently weighs what he did when he was 12.. 🌟

PRAY PRAY PRAY things go well tonight so we can go home tomorrow!!!! Pray he doesn’t reach nutritional levels so low he ...
06/25/2026

PRAY PRAY PRAY things go well tonight so we can go home tomorrow!!!! Pray he doesn’t reach nutritional levels so low he goes into “Refeed Syndrome.” That could be dangerous and keep us much longer.

So here’s what we know. Brady has ulcers all through his intestines. A lot of his nutritional numbers are low. There is an extreme fear of “Refeed Syndrome.” Which could be a very bad thing if he goes into that. Anyone who states this is an amazing hospital CLEARLY has not dealt with what we have. There is zero common sense, little reliable info, and hospitals conditions are terrible. When operating on little to no sleep, sunshine and many other things, you can imagine the frustration and emotion building as the days go on. PRAY for Mom.

GI still believes he has Chrones issues long term. Along with a few other intestinal type things. There will be lots of meds, monitoring, and nutrition happening for weeks to come. Nothing we haven’t dealt with for years.

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