Tuesday, January 25, 2011

The Equipment Challenge

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Measurements are in to attempt the Rifton Pacer Walker for Noah, I hope it works. I'm equipment leery since Noah is very particular about what will work for him and what won't. The kidcart is still not workable, and I have a borrowed Twist pediatric stroller that sounds like it will also become part of my collection whether we want it to be or not, that Noah indeed may hate as well- even if it is modified - finding it's way into the basement to collect dust. I found a stroller online that I'd love to try for Noah called the Convaid Cuddlebug, but it sounds like I won't be able to get my hands on one to try it for Noah. And just by looking at it I think it has strong possibilities due to soft fabrics and design that would make it sensory heaven for a little one like Noah. I know he needs something plush and soft. And I know what he likes in a stroller and I'm trying to find those qualities in a pediatric stroller/wheelchair. It's very much a frustrating process for me, and so many other special needs families. We have ideas of things we think might work for our children but there's always something standing in the way whether it be a manufacturer, needing a specialist, or the ever popular insurance denials.

I also was discussing obtaining a stander for Noah, something that may or may not be challenged by Medicaid and something hopefully we will be exploring in March. Right now his only options are laying on his back and it would be nice to give him some time during the day with other options to strengthen his legs so hopefully he can learn weight bearing. Our house is quickly becoming super small, something I never dreamed would happen when I first bought it. Noah's equipment takes up a lot of space. It's nothing like having regular baby items around, or gadgets, this stuff is heavy and cumbersome, and things we need for him. It's weird trying to already handicap modify the things I can, like removing my shower doors to get Noah in and out of the bathtub, trying to find places that will help me remodel my first floor with hardwood and lengthen my doorways to accommodate a walker, knowing in the end if Noah isn't mobile that I very well will have to consider abandoning this home all together to find one that is handicapped accessible. My mother warned me when I bought this house that it had a lot of stairs. Little did she know then how complicated this house design would actually wind up being later on. This was my dream home, and I worked so hard to get it, fix it up, and take care of it. And now I look around and just remind myself all the time you can't plan your future. You think you can, but it's impossible to know where you'll be tomorrow. It's such a false sense of security that we give ourselves.

Noah's therapists say usually you have to have homes custom built, like we have any pennies to rub together for that. But again I have a tendency to put the horse before the wagon. And really I shouldn't box Noah in prematurely. Although I try to be realistic about our lives, I still have the burning hope that I cling to. That hope that I refuse to abandon. The hope that Noah will find away around all of his neurological damage to make leaps and bounds. I'm just hoping this year brings something simple for us to celebrate, maybe a first word, or being able to sit, just one thing that we can celebrate and that I can put in a baby book that say yes you did it!

"I tell you the truth, if you have faith as small as a mustard seed, you can say to this mountain, 'Move from here to there' and it will move."
The Bible, Matthew 17:20


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Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.