Jaxy’s Journey

05/22/2023

Just a bit of an update. After my last post, someone took it upon themselves to contact dhhs AGAIN saying I have munchausen by proxy because of his mri and wheelchair. After dealing with them AGAIN, and them contacting his team of drs, it was OBVIOUSLY shut down. I’m almost positive I know the two people who are doing this and now the law is involved and the DA will be forcing dhhs’ hand to let us know who it was both times so we can file harassment charges so this STOPS. I WILL not be made to fear telling Jaxson’s truth or story as it has helped now, HUNDREDS of families find the help and resources they need for their loved ones when it comes to long haul Covid and children! Fear doesn’t control me.

03/24/2023

https://gofund.me/b5a0306a

Jaxy is an amazingly beautiful 8 year old little boy who got sick with Covid in early 2020. Covid … Nicole (Cole) Riley needs your support for Jaxy’s Journey

03/24/2023

Haven’t posted on here for some time but it’s because we’ve been so busy. Updates: I am in school with Jaxy full time every day he can physically go as the handler to Ovi his service dog. We had a bit of a break from medical appointments it now are in undated with them. Last week we saw his pediatric GI specialist here in Baltimore at Johns Hopkins Children’s hospital and she is very concerned with the amount of pain he’s having, the constant vomiting, and the blood and clots in his p**p. They are trying to squeeze him into the OR for this upcoming week to do 2 procedures to figure out what is going on. My baby sister flew down to us here and we flew out this past Saturday to see a neurosurgeon specialist at Arizona Children’s and he was AMAZING! He said if Jaxy’s seizures aren’t from his grey matter hererotopia, and they can pinpoint where in the brain they are coming from, he will absolutely do VNS for him and if it is from the grey matter hererotopia then he would do a laser brain surgery to take it out and his seizures would disappear. He said we just have to keep pushing for more testing and if they refuse at Boston Children’s, he said find a doctor that will. Jaxy sees his urologist tomorrow afternoon to figure out why he is still having flank pain and pain in his bladder and ureters when he doesn’t have a uti. We may be here in Baltimore til my 42nd birthday but I’ll do anything and everything for him to make his life any bit of easier that I can! He is going under on the 6th at Boston Children’s for an MRI of his back, left leg, and left hip as he is constantly in immense pain and has been using his wheelchair quite a lot lately. He still has Covid antibodies and so we still have no end in sight to his long haul Covid or his post viral fatigue syndrome. Like I have said in the past, share his story and I’m going to post another GoFundMe to help with his on going medical care. Even if you can not donate, just sharing it is a huge help! Thank you to all the wonderful people who are constantly thinking of, talking about and praying for Jaxy!

09/26/2022

PLEASE VOTE and SHARE!!! If I win not only will Jaxy be able to meet someone he has wanted for a while but I will be able to help pay for the wheelchair he needs that is wayyy over what we can afford!!!

Vote to determine who will win $13,000, a walk-on role in an independent film, a 2-night stay at Buffalo Bill’s House, and go head-to-head with horror legend Kane Hodder in a photoshoot for Rue Morgue Magazine!

06/17/2022

Haven’t posted in a little bit. We have some new news and are just trying to figure out our next moves. Will update with a post or video soon.

04/20/2022

This appointment was absolutely useless. Boston Children’s didn’t send anything like they said they would and she just looked at me like I was crazy when I was explaining everything that has happened to him.

04/20/2022

We are at Children’s Hospital in Lanham MD for a second neurology opinion for VNS therapy. Tomorrow is his ultrasound at John’s Hopkins Children’s and tomorrow his urologist sees him for his 1yr post opp.

04/15/2022

I feel defeated.

I.AM.OVERWHELMED.

Not in a sense that y’all may think. I’m used to the nightly seizures, I’m used to his Jekyll and Hyde and I’m used to the vast amounts of appointments we have. However, after hearing that his epileptologist didn’t fight hard for the VNS therapy because he doesn’t believe it works, we are at ground zero with finding both an epileptologist AND cardiologist who understand that long haul Covid is in fact REAL 😡. I.JUST.CANT.

I, we, need a fu***ng vacation 🥺

04/08/2022

Ovi’s tumor was benign!!! No cancer! Although because of how fibrous and into the webbing it was, if it comes back we will have to have his first and second digits on that paw removed! He’s soo happy to still be able to work and we start in the school April 25th 💜💜💜

04/01/2022

I will ALWAYS advocate and advocate HARD for the ones I love! Though Boston Children’s has been amazingly awesome with everything, we had hit a bump in the road with him seeing and transferring to their Celiac clinic and the GI dr. He already had an appointment for May 5th but with what happened last Friday night, the ER attending wanted him to be seen on an emergent basis. They kept trying to cancel all of his appts since he has been seen in the last 3yrs Of course this mama polar bear went off and the head of pediatric gi who is also the head of the Celiac center called and made them move things around and now he will be seen on Tuesday the 5! NEVER take no or we can’t or we don’t as an answer when it comes to you or your loved ones health! There is ALWAYS a way!!!