Thursday, January 27, 2011

A Shameless Plea ...

Hi all -

The following is a shameless plea for help.

As many of you know, my now eleven year old son, Kameron, has had a pretty tough road. He was a 25 week premie with a grade four brain bleed (translated: he was born 3 months early because his biological mom couldn't stop hitting the crack pipe while she carried him and he should have never survived his extreme prematurity); after he came into my foster home at a year, on a ventilator and with a feeding tube in his tummy, he thrived, and around 3 years later, was off the vent, had the tube removed, and was looking great.

Then, when he turned five, he inexplicably began having massive migraine headaches, vomiting, seizures, and stroke-like symptoms. Turned out he had some crazy thing called Arteriovenous Malformations. Lots of them. They are kind of like aneurisms in his brain, threatening to burst and kill him. More than thirty procedures, including brain surgery, later - no more major seizures. In fact, he's been mostly seizure free since August 2008. Awesome!

So, now we address his other physical issues. Little man can't walk. He's been scooting on the floor, and with a special walker (called a gait trainer), he can move around some. To the Orthopedist we go. Now, we've been going to the Ortho doctor for years. But, this time, when we did a check-in hip x-ray, this is what it showed:

Now, I'm not a professional, but these babies looked bad, even to me. He needed surgery on both hips. The operation included cutting through both femurs (say WHAT?), bolting them back in the right place, and rebuilding his left hip socket.

Sure, says I. We can handle that. Ha. "We"? Kam's the one who went through it all. I just helped with the after care stuff. The surgery was September 14th, 2010. It lasted six hours, and he came out in a thing called a Spica Cast. It encased him from just below his nipple line down to his ankles, made him look a lot like a little plastic cowboy, you know, how their legs are in the ready-to-sit-on-the-saddle position? Like that.

And yes, there was a hole in the front and back for the personal hygiene stuff. Enough said.

He was home the entire six weeks, mostly because he was doped up on pain meds the first two weeks, couldn't poop the next one (kidding, kind of), and really because the only wheelchair I could fit him in was completely unable to be transported on a special bus. He had a tutor for a few hours each morning, Mr. Steve.

Transferring him from place to place - like bed to commode to wheelchair - was accomplished with the help of a thing called a Hoyer Lift. That's the pic at the top of this post.

Okay, so we get through this. He has the cast removed, and we start physical therapy, pool therapy, and getting back to school therapy. What didn't I plan for? Oh yeah. He's had major surgery on both of his legs. And both hips. Hummm. Guess there will be some weakness, pain, and general tough stuff. Yep.
But, he's a tough kid. "Survivor" doesn't begin to cover it. He is a bit cranky - ha! But, so am I by this point.

Bottom line, he, me, we, are all doing better. BUT the reason for this particular post is to, as I said, make a shameless plea for help. Kam is officially a paraplegic. Actually, I think they diagnose him as a quad, because he has a really weak left arm, and they don't call people tri-plegic. But, I don't have a way to transport him. I drive a Pacifica. It's kind of a station wagon. Not a van, not a sedan. In order to take Kameron to his many medical appointments, I have to lift him up into the bucket passenger seat, and then lift his wheelchair (which weighs 27 kilos - 59 pounds) into the back of the car.

Kam now weighs 110 pounds.

I am a strong woman, thank God. Really, I mean that. But, I am not getting any younger. And the years of caregiving are taking their toll. My back is prone to serious spasms, and frankly, I avoid taking Kameron out at all costs. Obviously, I make it to the necessary appointments; I have to. He has to see the PTs and the OTs and the doctors.

But, I have for years wanted to be able to take him out on regular family type things. To go to the park. To take him to the movies (although behavior can be a bit challenging...), for crying out loud, I'd like to just throw him in the car and go to the grocery store.

He needs a wheelchair van. Seriously.

I have looked into this for a long time; they aren't cheap. A new conversion van is in the 35k range. Funny thing is, I looked at a used Caravan, a 2000 Caravan, and the price on it was $20k. Even used, they are extremely pricey. And I just don't have the ability to finance one. There are some on Craigslist that are from the 90's that go for around $6,000, but I can't swing that right now, either. And he is getting bigger. We just got him fit for a larger wheelchair.

SOOOOO, I am asking for help. I added a "donate" button at the top of the blog. If any of you feel like you could or would be able to help in this, I would be beyond grateful.

Kam's had a some challenging times, and yet, he's a really good boy. He has a long road ahead, and frankly, as his sole caregiver, so do I.

Anything you can do would be so so so appreciated.

Thanks everyone. Oh, by the way, this is how his hips look now:
Aren't they BEAUTIFUL??


  1. Anonymous9:24 AM

    He and Amber are related, I swear. I'm going to forward this onto to a wonderful goddess, like yourself, who may have some ideas on this.
    Please stay in touch with me. The past month has been extremely challenging for me NOT in regard to Amber but lots of grief surround family losses, very ill best friend etc... BUT I want to continue to be in the loop with you & yours & obtaining a van.
    Love & hugs,
    Your friends Karen & Amber

  2. Thanks, Karen - I will definitely be lifting you up...

  3. Hi, Karen. You are an amazing woman. I'm so glad to hear Kameron is seizure free and that the surgery is behind you, and that it went well. I'll pitch in with the van and spread the word about this.

  4. Thanks SO much, Ellen!! You're pretty amazing yourself!

  5. Anonymous4:49 PM

    MAMA RAIN! i tried 2 do the paypal thing but i d k if it worked?


  6. Hi Dutin! Nope, it didn't come through... =-(

  7. Anonymous10:29 AM

    Kathy - I think you should show a status bar that let's everyone know how close you are to your goal amount - because while we all may not be able to contribute a large amount at once - seeing a status bar might get you multiple donations from folks....just a thought.

  8. Thanks - I'll try to find one...

  9. Anonymous8:46 PM

    Dear Kathy,
    I understand what you are going through my daughter is 4 and she is paralyzed from her waist down she has the most severe case of spins bifida. And at 4 she is 52lbs and she is heavy so i feel u on that. Have you ever thought about putting cans at gas stations or having a poker run to raise money or one of my friends once told me that if i ever got in desperate need for help because haveing a special needs child can be very expensive to try and write the ellen show or oprah or some organization like that. this is just some ideas for you. one more is talking to your local stores about donate food and have a cook out and charge people for the food that way all profits go to the van. i hope that some of these ideas help. nikki

  10. Thanks for the ideas, Nickki!