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Thursday, October 7, 2010

Fire On, Water A-Boilin'

I hear something...the sound of water boiling, maybe? Where's it coming from?

It's coming from this pot because a flame has been lit and the water is a-boilin'.

No, I'm not mad, I'm energized. I'm motivated.

Intensive physical therapy has done good things for Christian and I've learned a lot from it. As I was contemplating the next fundraiser and therapy trip I felt a little uncomfortable. Uncomfortable is really another word for guilt. I felt guilty that Christian had all these opportunities, but what about other kids? What about other parents who don't have the resources? This was Christian's second intensive physical therapy trip, in addition to the other trips we've taken for other therapies. We're not rich, by any means, in fact, we're a one income family. We make it happen, but what about other parents that don't know how or where to start? What about the families that are isolated or don't have the amazing network of other mamas out there to show them the way? Does that make their child less deserving?

Absolutely not.

My thoughts trailed along wondering why this wasn't status quo. Why isn't intensive therapy status quo? I mean it doesn't have to be boot camp. It doesn't have to be European. It doesn't have to be "alternative." The shear amount of hours spent on a child produces results and I'm convinced.

How about some perspective? Christian gets one hour of in home PT from the state per week and the state is just fine and dandy with that, pushing their family centered therapy bull crap, which actually is just a disguise for we don't wanna pay. Christian just attended a two week program, attending four hours a day, five days a week. Using my basic math skills, that's 20 hours a week in therapy.

Go with me on this one...

Let's take some of his accomplishments - more head control, increased neck strength and control, increased stomach muscle strength and awareness, reaching with open hands, and more overall movement. That took 40 hours in total to accomplish. Under the state's plan of one hour a week, that would have taken almost a year to accomplish. A scary thought.

Now, that may be using too basic of reasoning. I mean, of course, maybe Christian would have made those gains in two months or six months or eight months. We'll never know because with kids like Christian there isn't a magic number. It's - you do it 'til it sticks. If that means 100 times, it means 100 times. How is 100 times supposed to happen? In two years??? Why? When it could happen in a matter of weeks?

So I'm just wondering why this isn't the norm. Even if it's not state funded. Why isn't it available here? Why isn't it available through grants? Scholarships? Private pay?

Going back to thinking about other kids and how to get kids in need the same things I'm so driven to get Christian, I was thinking scholarship program, nonprofit, fundraising for others,...but then my husband reminded me that maybe we need to think bigger. I told pot is boiling!

And going back to intensive physical therapy, I found out there is actually a study being conducted right now through the UofA in my town. I felt a little glimmer of pride when I heard my alma mater was actually pulling through and could be doing something that may potentially help my kid. So I'm on a quest to get more information about the program (I already know Christian doesn't qualify but I still want to know ALL about it, program goals, and how it's going). I'll keep you posted on that!

So we're thinking big. Our water is boiling. I'm determined. At the very least, I really want to develop something so that other kids in need can have the same opportunities as Christian. I'll keep you posted on that, too. For now, all I can offer other families is a great list of agencies that have grants and scholarships for therapy and equipment, some of which we've been able to use. I received it courtesy of Euro-Peds. It's in my side bar and you can view the list here, too.

A couple more things...

Wanna see the coolest T-shirt ever?

I picked it up at Euro-Peds and I love it so much.

(Someone needs an iron.)

And today Christian finally got some new kicks!

They are pretty much identical to his old ones in design. And Superman, chosen by Daddy this time, had to make another appearance because he's strong, just like Christian. Another difference is that the toes are lifted slightly so Christian can get a good stretch in his toe muscle that pulls so strongly to pointing. There are also several other little dips and bumps to create pressure points in the sole to break tone.

Speaking of which, the orthodics guy was so nice. He is about to conduct a study in children about decreasing tone...without meds! What?! That's our kind of study. Sign us up! He already knows our PT, so he's going to speak to her and maybe in the next few months, Christian will be part of the study!

So, the fire is hot under our boiling pot of water and we are ready to cook something. Something big.


Jen said...

There actually are lots of grants out there for medical coverage, specialized or otherwise. Most of them take a good deal of searching, a little begging, a fair amount of paper work, and/or a unique story/life. Many children's hospitals know who and where to find these grants. The only rough thing is, depending on the hospital/area the money has to be used in or at an affiliate of that particular hospital. They also tend to be more prevalent in areas where a children's hospital has a very wealthy neighborhood near by (rich old men always need a tax write off). While not the easiest to find, they are out there!

Karen Owens said...

Those are some awesome AFO's!!!!

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