Destin’s World

03/26/2026

Wanted to give a huge shout out to Juliet for making Destin’s day. The kindness of this woman, a complete stranger, while out for her birthday, to take the time to make him smile is absolutely amazing! He spent some of the money on Steven, so he in return made someone else smile. ❤️

03/02/2026

Wheelchair update…. The insurance company has denied the wheelchair 3 times, the doctors have appealed the denial 3 times, so it went to a third party for a review, they also denied it. At themost recent follow up with the doc he was absolutely stunned that they have rejected so many times and for so many different reasons each time. So next Monday Destin will reevaluated, measured and all the specs put in, along with all his limitations and we had to stay the process all over again after going through it once which took over a year. The insurance company seems to play on words and that’s how they get to keep denying it. So going forward the doc said they are going to be very specific so there is no chance of them playing on words this time. But…… I am starting to wonder after the messages with his bowl management team, if the docs are the ones that are not playing with words. I am absolutely amazed at the conversation and responses I got….. did you even look at his chart? Do you even know what’s wrong with Destin before you speak? 😡😡 how can you treat/give advice if you don’t even know the obvious reason he sees you in the first place. I tried to be nice in my final response because i knkw they have a lot of patients, but sometimes it’s a little hard 😡😡😡 So in closing, is it all on the insurance company when they think he can walk but with difficulty, or is it the medical personnel that think Destin knows and controls when he has to 💩 🤦‍♀️

02/10/2026

Update on most of his apts for yesterday…..
Warning….. might be a litte gross 🤮

The xray revealed what we have always known about Destin…… he is full of 💩 just kidding lol. The X-rays did show he is quite backed up. Thankfully they did just randomly check because we would have never thought for as much as he releases after his daily suppository there was anyway there was anything left in there 😂 so we are going to start trying a couple different things to get him cleaned out. And the most basic test we are doing, he has to eat 🌽 tonight for dinner and we have to see when it comes out. That will tell us about how many days worth he is backed up. According to the dr what you eat today should come out tomorrow. I said that makes sense because he had a 💩 the other day and it had 🌽 in it, and his dad was like when the heck was the last time he had corn and we both laughed and didn’t think much of it. Now we know. So corn tonight, upped his suppository’s for 2 days and over the long weekend since he will not have school they are upping his 💩 meds to get everything out. Destin can’t push to go to the bathroom so everything might not come out and eventually over time it backs up. Because of his condition this will be something he will go through every once in a while, and as he gets older and gets to know his body, he will be able to tell when this is happening.

His kidney Dr said all the preliminary tests look good and he has some strong working kidneys. We are waiting on a few tests to come back that usually take a week or so but she is not worried.

The physiatrist which basically overseas all his medical needs and works on his care plan would like to increase his spasm meds to decrease the spasms but is understanding of us not wanting to go that route just yet until we eliminate all possible causes. He beleives Its because he is growing and needs a strongerdose, but we want to make sure they are not because of His hitchhiker on his back, his 💩 backup, his hip etc. he also is going to see what we need to do for his wheelchair. (I will be Making a post about the “Wheelchair Saga”)

But other wise he is as healthy as he can be, just learning new needs his new body is teaching us.

02/09/2026

Lots of drs apts today. Kidney Dr, blood work, X-rays to make sure he getting all his 💩 out during his regime, and the Dr to go over his MRI results along with all his other medical needs to make sure everything is going smoothly.

02/01/2026

He says the Bowling alley gave him a trophy for doing so good ❤️

02/01/2026

First time trying bowling in Destin’s new world. Success! He loved it! Boardman Lanes thank you for being so accommodating ❤️These boys are living their best life!

01/30/2026

We finally got our update on Destin’s little hitchhiker. So because of the paralysis causing him scoliosis, his ribs and everything are shifting and turning. Because of this, tissue gets irritated and damaged, and with it protruding his brace is also itritating it. The hitchhiker is irritated tissue. Which could be what is causing his increased spasms. Because like we said in other videos he can not feel but his lower half can feel itself. They said this hitchhiker would likely be painful and his body is reacting to th pain, even though he can’t feel the pain himself. We have to go back to the Hanger and get his brace modified, like cut a hole in it so the hitchhiker has time to do its thing with out the brace adding more irritation. The positive side is that it’s not a tumor, it’s not a cyst or anything else that would require surgery. They always find a unique remote control for him…. Last time was a remote controlled hot dog, this time a remote controlled egg 😂

01/17/2026

01/17/2026

Here are some short videos of what his legs look like at night while sleeping.

01/17/2026

For some reason it won’t let me post all the videos and pictures together. But this is what his feet do to each other at night. Socks just get kicked off.

01/17/2026

I know everyone has been asking about his test results. We did get them back but they are in Dr lingo so we have to wait for them to call and dumb it down for us. But they do believe his little hitch hiker has a strong correlation to his increased leg spasms and bladder/cathing issues. There was a referral sent to neurosurgery. A lot of people think that when you are paralyzed that that part is just dead. I don’t know about all paraplegics because I can only speak on Destin’s. His legs can feel he just can’t feel his legs. While everything below the injury line can feel and react because of the missing spinal cord because injury the signals can’t get to the brain. He has been on spasm medication for his legs and another for his bladder spasms. They were working quite well until recently. Imagine going to sleep with Mexican jumping beans for legs. They pull his blankets off, they scratch each other, rip toenails etc. Some nights they jolt him and wake him up so much he can’t go to school because of the lack of sleep. And if anyone that know Destin…… he is a BEAR if he doesn’t get his sleep!