Pray for Brady

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

11/21/2025

Smallest of updates...

A new medicine has been ordered for Brady for the ongoing seizures. He starts both the gastro doctor prescribed and the one his neuro prescribed tonight. I know I said it last time, but hopefully, he won't have any more seizures...

As far as his IgG infusion goes... I might have to sell my soul on this one. 🥴 So lots of back and fourth and as I think I mentioned before, he was approved. We have met our deductible and out of pocket thankfully, but that starts over in January. So I had to sign a financial agreement to pay our 500 deductible plus our 10% starting in January until we reach our out of pocket... to the tune of $1600 something a month. Now, with that said, our out of pocket max is $4000 so it wouldn't take long... I did reach out to a patient liaison through our insurance and talking with her, the plan is to start with this company just to get him medicated asap and then switch to a different infusion within our insurance where the cost shouldn't be as much... I don't understand it all and honestly I don't care to. I just want him to start infusions.

I got a call from the pharmacy to go over risks... yall, please pray for no clots to form, no meningitis to happen or any other issue that could arise while using this. This company is currently working on trying to get nursing staff for the first 3 visits to "teach us" how to administer at home. Hopefully next Tuesday... we should get the infusion pump, epi pen, pre meds, needs, tubes, etc and medicine a day or 2 prior and then a delivery once a month for the medicine and premeds which I believe is going to be Benadryl and pain meds.

The infusions will now be every 2 weeks and they will take between 1-3 hours to complete.

11/20/2025

Lots of Brady updates.

Saw a gastroenterologist yesterday. He's put him on some new medicine to try and help the stomach pains he's having. He also suggested we get several tests done.. one specifically is some MRI of the gastric areas. Apparently it produces a really good image of the intestines and stomach area. Others are blood work and some 💩samples 🤪 His words to us were "he's a really complicated case", like we didn't know this. Anyhow, he's also mentioned us getting another set of professional eyes on him for a case study at Riley, Cincinnati, Boston's Children's'or Vanderbilt. We are seriously considering this...

Brady did receive his new braces but it'll be a while before you see him skipping along in them.. he has to wear them in short stints to get used to them.. he's up to 20 minutes 2xs a day currently.

He also had another seizure today at therapy. Thankfully he did get down to the ground like we've discussed with him many times. He was surrounded by his really wonderful therapists. I honestly am not sure how we would have navigated the last almost 5 years without them. I put in a call to his neurologist but haven't heard back yet.

Finally, Brady was approved for the subcutaneous IG at home infusion. We still have a few hoops to jump through, but hopefully will
Start those by next week.

Until next time friends. ❤️

11/12/2025

Neuro upped his keppra to 1500 2x day. 🥴
Hopefully, NO MORE SEIZURES will happen.

11/12/2025

Welp... made it mostly home before Brady had another seizure this evening....
it's never ending for him
🥺

Today was infusion day. It's about a 6 hour day in a small room. To say we all get a bit stir crazy is an understatement...
11/11/2025

Today was infusion day. It's about a 6 hour day in a small room. To say we all get a bit stir crazy is an understatement. 🤪 thankfully he tolerates it well and in typical Brady fashion stays positive.

This infusion wipes his immune system.. today his IG levels were drawn and they are the lowest they've even been. They have dropped significant in the last 2 weeks. As you can see, his level went from 326 to 268. Average rage is 694-1618..

We are still waiting on approval for that at home subcutaneous ig infusion to help boost his immunity. I've been told we should get clarification from insurance today on if it's approved through the referring company the Dr referred it to. Fingers crossed he will get these started soon and get his energy and immunity back!

On other news, Brady received his new Bioness braces. We should have those up and running soon! We will post on those as soon as he is in them.

Until next time...

❤️

11/01/2025

Leaving the ER with Brady here in a bit. He woke with nausea and stomach pains and had puked again, this time puking up his seizure medicine. He's also lost 2 pounds since mid September...

We come in concerned it was pneumonia (this is how he presented last time) however his X-ray shows everything is clear.

We've done ct scans (shows thickening and inflammation) bloodwork (inflammation markers are elevated) zofran (so he can take another dose of his seizure medicine and keep it down) and now ultimately they think he likely has Crohn's disease... we have to follow up with a GI doctor again and go from there. Apparently his scans showed some mild inflammation a year ago, but now it's moderate thickening of the illium wall and what appears to be lots of fluid. It is NOT his appendix... at least they don't think it is for now.

I just want him to feel good and be healthy.

Once again, I'll post more as soon as we know more.

😩

Pirate Brady is set up and ready to pass out candy! On a side note, his IgG levels are very low.. he will be getting hom...
10/31/2025

Pirate Brady is set up and ready to pass out candy!

On a side note, his IgG levels are very low.. he will be getting home administered replacement IG either weekly or biweekly once insurance approves it. Anyone out there been on hizentra?

In other news, Brady is getting his bioness braces soon! Updating more after we have them.

He's also going in for a sleep deprived eeg on the 1st of December. Stay tuned.

❤️

10/15/2025

Update:

Neuro is increasing his antiseizure dose to 1000mg per day.... we also have an appointment.

Today he does feel better, still has a headache and some nausea.

We head home tomorrow.

Small update on our guy after today's seizure. First, he says thank you for praying for him. He's struggled with nausea,...
10/15/2025

Small update on our guy after today's seizure. First, he says thank you for praying for him.

He's struggled with nausea, anxiety, fatigue, dizziness and a migraine like headache all day. Most of the day only tolerating very small bites of food. We are keeping him hydrated and watching him very closely.

This evening he was able to tolerate about 10 good sized fries.

Despite all that he is feeling, he's pushed through and done his best to have fun. He's wanted to stand multiple times for photos with his sisters.

He is looking forward to being "home" aka the condo here in a bit.

10/14/2025

Hey everyone..

We are currently in Florida at Epcot. Just got our day started and Brady's had another seizure.

We've put in a call to his neurologist.. waiting on the doctor to call us back.

Please send a prayer that he doesn't have another one today. This one was short, about a minute long.

09/26/2025

UPDATE:
Brady is doing fine. We were sent home last night. No life flights or anything bad this time. Upped his anti seizure meds. Hopefully this was just a one time thing. Prayer warriors were amazing. Thank you!! ❤️🙏🏽

This is an absolutely huge opportunity for Brady. He has not been able to be a part of and sports and physical group act...
08/12/2025

This is an absolutely huge opportunity for Brady. He has not been able to be a part of and sports and physical group activities for over 4 years. We are so thanks for a great friend Shane at Lewis Martial Arts for giving Braudy this chance. “Quality over quantity” and “we are all different in our abilities.” To say he is on cloud 9 tonight is an understatement.

He continues to strive to be better, stronger and wiser everyday of his life. There is more to this opportunity then anyone will ever know.

❤️❤️❤️❤️❤️

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