Thursday, July 20, 2017

New gear

Ryan is getting heavier and heavier. He can walk when we are holding his hands, but he goes somewhat slow and it's definitely a hands-on job, not something you can do when you have a long way to walk or need to use your hands to, say, push a shopping cart or something during errands. He's getting stronger and better at walking, but it's not always realistic to be able to walk with him everywhere and he's getting harder and harder to carry for long distances.

We've been hesitant to get him a wheelchair for a few reasons. 1) a wheelchair? For my baby? It seems so "real", and each new reality we we come to hits me in the face. You'd think I'd be prepared for it, but I'm not. Having a wheelchair means he has a real disability (duh). It's still a hard concept to totally accept. I'm not sure why, because I know it's true. 2) Insurance only pays for one type of equipment like a wheelchair every 5 years. Ryan is still making lots of progress and there is hope that he may not need a chair or that he can get to the point when he needs a self propelled chair. Right now he would not be able to propel himself in a chair, but if we got a stroller wheelchair, it would prohibit him from moving himself around if he were to get to the point that he could self propel within the next 5 years. That right there is a tough call. Whatever we decided to get, we would be stuck with for FIVE whole years. That's a long time when you're dealing with small kids. They can make huge leaps and bounds in short periods of time. Essentially we were in a holding pattern, not knowing which type of wheelchair to go with, so not going with any of them.

That's when I came across another mom who works at the boys's school and has a son with special needs that is older. He had a stroller wheelchair that was sitting in storage and she was willing to give it to us. What luck! We can use this one, test it out, see how Ryan does with it without starting our 5 year equipment freeze with insurance. I'm so thankful for this sweet lady and her generosity. We'll find a way to tell her "thank you" at some point!

I took it to school this morning and got his PT to make adjustments as needed to fit Ryan. He LOVES it. As soon as we put him in it, he starts kicking his legs and smiling!





Can you tell he likes it?!?!?!

In addition to that, his school is loaning me a stander to keep at home to help him do more weight bearing and standing to get him stronger and more used to the position. He doesn't like this one as much as the wheelchair, but he's going to have to get used to it. Knowing Ryan, he will end up liking it because he likes just about everything.





So far, not a huge fan of the stander. :(

I'm also working on getting a handicapped placard for my car. Of course there are some hoops I have to jump through and some confusion on my end about what all is needed for the application, but once I get that, it will be easier to get him around town and in and out. That, of course, is going to make it REAL again. Do I sound like I'm in denial? Well, I guess I am.

It's making me sad, but I also am trying to think about the positives: front row parking (!!!!), no lines at amusement parks (should we ever get crazy enough to try to go to Disney), maybe we can get a handicapped spot at Clemson this fall for football games!

I love my precious angel and would go to the ends of the earth for him. He is such a light. And us finally accepting and coming to terms with the "handicapped" label, while it makes me sad, is a minor blip in in the grand scheme of things, especially compared to how much joy he brings us each and every day.  

1 comment:

  1. Ry Ry is fearfully and wonderfully made! And what a blessing about the stroller wheelchair. Love y'all! xoxo

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