Next stop on our journey...Durable Medical Equipment Land! Ever been there? Great! Neither have we.
Let's start with the chair. This isn't just a chair, like the ones that hang around your dining room table. It's a different kind of chair. For babies and younger kids like Christian, these aren't really wheel chairs. A traditional wheel chair is...I don't know...a chair you wheel around, like the old school ones. At least that's what I consider a wheel chair. Oh, no. It's a whole new world out there.
The chair Christian will get is kind of like a stroller that will meet his needs. This is prettying up the word wheel chair, really. This chair will give Christian the support he needs and I'm really excited about it. This wasn't always the case.
In the beginning when people talk about getting a "chair," I'm sure every special needs parent thinks, "That's nice. But my child will be walking soon, we won't even need to go there." Then the weeks pass and the months pass and you realize...my child really needs this. We've been getting away with a jogging stroller, but seriously, this is not comfortable for Christian, nor is it functional in promoting better posture or alignment of his body. And that's when you come to terms with this part of the journey.
It also helps me come to terms with this need for a chair if I can pick out the pattern of this particular chair. At least it's fun...green and brown with puppies all over it. You have to make the best out of it, ya know?
Now, I'm excited for the chair to arrive. Really excited. Christian really needs this to be comfortable. And with good positioning, he's less irritable and his body can relax.
Now also in Durable Medical Equipment Land you'll find what is called a stander. This is a device that pretty much looks like a medieval torture device. The fact is that Christian needs more weight bearing and this will help with that. Also, I've just started putting Christian in a standing position while I'm working with him and something different happens to him. His legs soften, he sinks into the position, and relaxes. He likes it! And all of the inputs he's getting into his joints from standing and bearing weight have caused him to start moving his legs and feet.
Which leads me to think...why haven't any of the therapists wanted to do this sooner? I mean I've heard various therapists talk about getting him in a stander for six months now. But no one has actually done it yet. And now that I'm working with Christian multiple times a day and really getting to know his body language, I wonder why we wasted all that time driving to outpatient therapy to do the same damn thing over and over again in PT - stretching his legs, massaging his legs, stretching his legs, pushing this toy, looking at that toy and repeat. Now that I look back, there were hardly any results!!! And any gains Christian got from PT were erased in the hot car ride back home. Ugh! I could go on.
But weight bearing...ah, weight bearing. That along with some other therapy exercises (which I will go into at a later date) I picked up online have made my son melt. Melting is good! And all this in just about three weeks of weight bearing/standing exercises. Must get a stander! That's the next step in Durable Medical Equipment Land.
There's so much in Durable Medical Equipment Land and we've only just begun. It's not a place I had wanted to be, but here we are.
My husband wonders where we'll put it all - they are usually quite large and we don't have a lot of room. I told him I didn't care if we put it on the roof for storage, if Christian needs it we're getting it.
Christian's PT brought us catalogs chock full of Durable Medical Equipment Land landmarks to visit. It's really a kin to shopping. It's a new kind of shopping. Shopping for equipment that might make your child feel better, look better, function better, socialize, exercise, become part of the family again. I'm up for that kind of shopping any day.
The chair was shipped on the 13th so who knows where it is now. The good news is it's en route. I will be sure to post pictures as soon as we get it, brown and green puppies and all.
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4 comments:
Sounds awesome Shauna! I'm glad you're finding these things that are going to make sweet Christian more comfy and be better for his little body!! I haven't posted a comment in a while although I've been reading your blogs consistently but you just never cease to amaze me!! You have so much on your plate with Miss Lola as well now but you continue to do 1000% for Christian daily and you don't ever complain! Wow......Christian is so lucky that you continue to research what is best for him and do your best to make that a reality for him. :-)
How exciting!! You are doing such a great job Shauna, your kids are very lucky to have you for a mom, they must have picked you out!!! Can't wait to see the little super hero in his new chair! Take care and God Bless!!!
AWESOME Work GIRL! Can you pt loan you one till you can get the one you want? i commmmmend you and your advocating is so great. Are there awards that i could give you? MAMA of the YEAR-seriously. You give and give and just had a baby and therapy therapy and i am in awe of all of it. He is making awesome progress tooo!
Hi Shauna, I'm new to christian's blog, found it through Marissa's blog. My little boy Gabe is 3 1/2 and had a hypoxic event that caused brain damage. i only read a few pages of your blog but found that I could relate to a lot of what you were talking about. I will add christian's blog to my list and continue to check back in on you guys and I will be praying for a continued healing in Christian!
God bless,
Rachel
http://gabemarini.blogspot.com
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