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Thread: need advice and experience for child SCI

  1. #11
    I would recommend holding off on purchases until the visit to Shriners. They will have all this info, and more. They know if something is worth it.

    I'm serious here. You're desperate to help your kid-perfectly natural. And there are a thousand predators out there that want to take advantage of your pain. There are no magic bullets. You need to be careful with your $$.

  2. #12
    it is somewhat difficult to get into shriners. talk to kim curren there, she is a wonderful case manager. it will take some time to get in, but everything is wonderful there. once you go, and are under 18, you can comeback until your 21st birthday.

  3. #13

    LIVING with SCI

    I saw your son is a young (and recent) injury. That's gotta be tough on him ... but equally tough on you and his dad. Sorry to hear you are going through this.

    It sounds like his rehab wasn't great. That's a huge shame ... but it's not too late. Get the kid to a Shriners or a Childrens Hospital or a "model" rehab facility or a program like projectwalk.com. Im sure he'll see big improvements! even if he doesn't walk out or have full bowel/bladder (those are some of the last things to come back) ... and he'll maximize the use of whatever he DOES have. Returns keep appearing for up to 2 years after injury ... maximizing your body's abilities is a lifetime job.

    I'd like to echo Dr. Young's comments: frustrating as it is, I had to accept that there are more important things than return. I got tired of wishing and waiting my life away.

    Plus, I had a pressure sore scare and realized that I needed to take great care of my body and spirit NOW so I'd be ready in case they find the "cure" pill someday. If your son goes down with a sore or some other complication ... that makes life even tougher and more limited than it already is. The thing is - living life to the fullest now (while still in a chair) doesn't mean that we've given up on a cure, or walking or returns. I just means we understand that life is short and we need to make the most of today.

    You and he need to become EXPERTS at bladder/bowel, preventing UTIs, checking his skin, keeping it moisturized and healthy, maintaining a good body weight, eating healthy, checking his cushion and doing pressure releases religiously. All that stuff they tell you about in a good rehab program.

    And then there's the spirit. The kid's gotta be able to continue being a kid. Hanging out with friends. Going to school. Playing video games. Going to Disney. Playing sports. Whatever floats his boat.

    To be really honest (sorry) he's not gonna be on the High School football team, but in my opinion, sports are one of the MOST important things for a young SCI. Encourage him to think about wheelchair basketball or racing or tennis or swimming or skiing ... the list goes on and on. Seriously. Being on a team will do him wonders. Meeting other kids with disabilities will teach him more than any rehab. Being active athletically is probably gonna get him more return than any drug we know of today.

    He needs to also meet other people with SCI who are living full lives. Preferably his own age. Again, wc sports are ideal, but you and he can also connect with people thru his rehab hospital or on the internet.

    If, a year from now, your son has gotten everything back, and is living a "normal" life without a chair and all the other SCI fun ... you'll still be glad you did the things I'm recommending.
    Last edited by kevinpatrick; 07-17-2008 at 05:37 PM.

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