Feeding Evaluation

If you’re Facebook Fan then you know that I got a call on Tuesday asking that I bring Charlie in on Wednesday for a feeding evaluation.

It’s hard to describe the joy of knowing that your child is about to be entered in the special kids version of a spelling bee—one where no one really wins and with even the best outcomes, you’re not going to be called “normal.”

So, yay!

I was told to bring a variety of foods, so Wednesday at ten o’clock found me making mini-pizzas and grilled cheese sandwiches which is actually just two different kinds of bread with cheese. Shut up. I brought Goldfish crackers too.

We arrived promptly at eleven as instructed and I am told to wait with two other families whose children are there for enrollment in the gifted program. I don’t need to point out the irony. But I will. I’m there so they can see if my child can eat and these people are there because their kids are so incredibly smart they are simply unable to mingle with the riff raff normal folk. Can’t believe they let us sit in the same area.

more flowers 014Fifteen minutes later they arrive and we go in for our evaluation.

One little problem: No chair for Charlie to sit in.

They brought in a Rifton chair with a strap at the waist, but the waist isn’t really Charlie’s problem area. The problem is that he tucks his pelvis and slides out of a rigid chair. All of the chairs we use with him have a thing-a-ma-bob that goes between the legs that prevents him from doing this. I looked it up and apparently it’s not actually called a “thing-a-ma-bob” it’s called an “abduction block.”

Yeah. That thing. They didn’t have one.

The OT decides that she will simply hold Charlie in position. She’s probably fifty-five and the image of her bear-hugging Charlie into the chair is pretty comical. more flowers 018

I laid out my array of cheese covered breads and being his mother’s child, Charlie went for them like pre-pubescent girls after Justin Beiber. He runs his hand across the table, he shoves food in his mouth, drops it, picks up something else, puts something in his right hand for later, lunges to reach things that are clearly not for him. It’s fun.

Meanwhile, I’m answering what have to be the most detailed eating-related questions I’ve ever heard. There was basic stuff about history of pneumonia, suck quality, tests done, etc.

and then it got crazy.

Does he store food in his cheeks? Apparently Alvin, Simon and Theodore are looking for a fourth.

Can he breathe while he’s eating? Since he’s still alive, I’m gonna go with yes.

Is there anything he has trouble chewing? I said steak and SHE WROTE IT DOWN. I have trouble chewing steak. Besides, last time I checked, the school menu has no mention of filet. Hell, I’ve worked in schools, I’ll be lucky if he sees any meat besides the pre-formed meat patty variety. more flowers 017

In the end, he passed with flying colors. He has something called “rotational chewing;” he clears his cheeks; he eats hard and soft foods. He will continue to be followed by the dysphagia team because there’s no victory like the one they immediately snatch away from you.

They’re also going to add “thing-a-ma-bob” to his list of required equipment.

One Wonderful Thing

Want to hear some good news? Of course you do! So, you remember my wheelchair debacle? Well, our PT recommended the company to us, so I told her about the whole thing–I put heavy emphasis on the fact that I was going to have to shell out my entire deductible because they hadn’t ordered it last year when I placed my order. We basically said that we were going to order our chair through a different company because we were that unhappy with the situation.

Know what?

The guy called us and apologized. Apparently our PT called and gave him a stern talking to. He said if we order the chair from him, he’ll waive our deductible. WAIVE IT! Chair=free (for us, anyway).

I’m a happy girl.

Dilemma

So. . . you guys remember that I ordered a wheelchair last year? Well, looking back, I can see that I posted on September 29th about our wheelchair decision. Since then, I’ve heard exactly nothing from our wheelchair representative. Not. One. Word.
Today, they called me. A woman asked me, “did you know your insurance doesn’t do pre-approval for blah, blah, blah?” Or something like that. I told her I didn’t even know what that means. Basically, my insurance company doesn’t do pre-approvals for medical equipment. So, you have to order the equipment and hope that they pay for it She also told me that I would have to pay 30% up-front, which is roughly 1700 dollars.
So here’s why I’m upset.

  1. It took them four months to figure this out.
  2. If the wheelchair had been ordered and delivered prior to December 31st, I would have had to pay $0 because we met our deductible last year. I realize that these things move slow, but since the claim isn’t filed until AFTER the chair is delivered, I feel like it was possible to have had the chair ordered quickly.
  3. Back when I ordered the chair, the big dilemma was whether or not to get a tilt chair. According to the rep, the tilt chair didn’t have self-steering wheels. Since then, I’ve had another special needs mom tell me that the newer models have both tilt and self-steering.
  4. I wasn’t given any choices with regards to seating. Barbara at Therextras very adamantly recommends a flat seat, and the rep told me they never do that. This bothered me, but it’s not like I had a lot of options. Actually, I had exactly none, so what are you gonna do?
  5. I Googled my wheel chair and the base model runs about $1600. I realize there’s a lot more to it than that, but it seems like they want me to pay for the entire chair and then they’re going to bill my insurance company another $3700. They’ll be making a pretty sizable profit for some sub-par performance.
  6. I heard through the grapevine that this company is swimming in debt and may go out of business. I’m worried that I get the chair from them and not be able to get any more service for it if they fold.

I feel bad. I mean, a rep came out to my house and measured Charlie and everything, and I’m sure he’ll lose money if I don’t buy the chair from his company. On the other hand, I don’t think I should reward piss-poor performance with our hard-earned money–we don’t just keep it in a tub and roll around in it in our underwear.

A source of mine has given me the name of another wheelchair representative who sells the same brand of chair. Should I just call them?

Has anyone out there ever tried to just buy their own wheelchair off the Internet?

Playing in our very own “Pond.” Idea shamelessly stolen from No Time for Flashcards.

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