Destin’s World

Update! Thank you to Mrs Snyders class for this amazing donation!

Came home to see these waiting for us. Thank you to the kind person that dropped them off. They are much appreciated ❤️❤️

For some reason my whole post did not cross post, so here is the context for the video yesterday lol.

I ask Kayla to keep the kids occupied for a bit while I get some stuff cleaned up in the yard….. and that’s when things went south 🤦‍♀️ when the bath water hit the chalk it literally looked like blood running off them 😂

Thank you little miss Nora and little miss Nelle for the sweet gifts and making him smile ❤️

Guess what day it is 🤔 He has been counting down the weeks and days and telling every stranger that even looked at him “my birthday is almost here” 🤣 maybe 7 is a milestone in his little mind, but he is sure one happy kid today! Happy 7th Birthday Destin! We Love you bunches ❤️

Edit…. We are getting some great and very helpful suggestions! I just wanted to give a little clarity for the wiring of this thing. The one we are looking at has a metal frame and grows with him till 12, has 2- 24 v batteries to last longer and support heavier weight as he grows.

I know this is a long shot and kind of a weird question, but does anyone out there in Facebook land have any ideas on how to convert a kids power wheel from gas pedal to a stick or button. When all the kids run off to ride bikes Destin is left behind, so we were thinking for his bday about getting a power wheel so he can go with them but the hiccup obviously is the gas pedal. I have been trying to watch videos and get an idea of what we have to buy and how to do it but I end up getting lost and don’t know what the heck they are talking about. Any ideas would be very helpful!!!! I know people are tagging others and asking around for us. Here are some pics of what we were thinking of getting and what we think we need to convert it.

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.