Page 8 of 18 FirstFirst 1234567891011121314151617 ... LastLast
Results 71 to 80 of 180

Thread: Heart Broken Daughter Recent T12

  1. #71
    I know your pain and frustration... our son's hips are getting tight too and it's hard to get him to do the stretching and lay on his stomach. He starts a PT program Wednesday locally as we're still on the waiting list for Austin. I felt we HAD to do something and the waiting is killing me. Problem is, I'm not sure what our insurance will say? Still don't have a stander either.
    I'm sending hugs your way too!
    FAITH: Is not believing God can, but knowing he will.

  2. #72
    I see you live in Arizona. Have you guys ever considered Project Walk in Carlsbad, CA? They can set you up on a great home program...especially since you've already got some equipment at home. You can go for a week or two and they'll teach you the program. My son goes there three times a week and is making great progress. We drive 100 each way but it is so worth it. You have a great week!

    PS Faithful...are you referring to Roll to Walk in Austin???

    Luke 5:24

  3. #73

    Future is Bright!


    I just happened upon this thread today, congrats to you and your beautiful daughter for all the hard work and progress.

    My daughter received her SCI (T5) back on 7/04 when she was 13. Here is Sarah's thread:

    Sarah will be graduating from her high school this month as valedictorian and will be leaving for Virginia Tech next month as an engineering student. Her ultimate goal is a Biomedical Engineering degree and onto stem cell research to be a part of the cure.

    Email me anytime to compare notes or whatever,


  4. #74
    tgoodwin - yes, we thought about it, but I don't think my insurance will cover Project Walk. Closer than Shriners.

    rick - Wow! I read your posts. I have lots of questions for you. I'll send you an email. Sarah is very impressive. You must be very proud of her.

    Update: Jess got her 2nd chair today. We are very pleased with the chair and that we don't have to haul the chair up and down the stairs anymore.

    Her KAFOS are currently being fabricated and will be ready next Friday. I was hoping sooner.

    I sent a request to the magazine Raising Arizona Kids to do an article on the dangers of window screens so we can prevent other kids from falling out of windows. They replied and stated that they would love to do an article.

    Sent application to Shriners. I'm planning to call tomorrow to see if she can go this summer.

    Not sure what we are going to do with her this summer besides therapy. I don't want her to be bored. The sessions for para basketball and swimming aren't held during the summer break. If my husband didn't work from home and our business wasn't so slow in the summer we would have to find somewhere to take her or someone to come to the house as we can't take her to regular summer camps as we have it the past. Her older sister is going to want to go to day camp, but unfair to Jess. I'll have to figure out something.


  5. #75
    You might check out the Neuro Center in Phoenix. Since they employe PTs they can bill many insurances. We have had good comments about their program.

    Why can't she go to day camp?


  6. #76
    Why can't she go to camp? The camps she as attended before involves swimming, roller skating, riding a regular bus and other activities that require use of her legs. Plus she still needs assitance in the bathroom. Even if they could accomidate her at some level she would be pretty upset if she couldn't participate in all the activities.

    I'll check out the Neuro Center.

  7. #77
    Shriners would be a good choice. They also have camps in the summer that I think would be great for her. I recently received some info on a Glam camp for teens/pre-teen girls to help with self-esteem, clothing, poise and confidence. It has met with great reviews previously. Let me know and I will get you the info if you are interested. Also I have a directory of camps for kids with disabilities, many are low to no cost. I will look for the online link.
    Every day I wake up is a good one

  8. #78
    Camps are businesses like any other, and need to provide accomodations for kids with disabilities. When I worked Girl Scout day camps we had several girls in wheelchairs. Is she involved in Girl Scouts or Camp Fire? Easter Seals and several other organizations run sports and outdoor camps in our local mountains especially for kids with disabilities as well. Don't rule out camps just because she has a disability. She should have all the same age-appropriate activities as any other child her age.

    Here are a few resources:


  9. #79
    Sorry, these links didn't pan out. We did sign her up for a free swimming session at Aqua Tots to see if the 1/2 hour swimming session is worth it and then pay for classes if it doesn't. I found that we can't do aqua therapy at one place and then PT at another as it will confuse our insurance (being billed from two locations). I'm wondering if I talk with my insurance what I want to do if that will resolve the issue. We only have a script for 2 to 3 PT sessions a week. I don't know why we can't get the intensive therapy here in state that we received at KKI.

    Camps might be impossible this year as we are broke this summer and we need the $$ to go to Shriners if approved. A reason we would rather do aqua therapy instead of paying for Aqua Tots.

    We received her KAFOS!!! She loves them. Our therapist was concerned that she wouldn't do well with them because of her tightness and really wants us to do Botox to loosen up her muscles. We talked with her doc (nurse practioner) and she said that she would loose function. Wondering if anyone else had Botox injections and what the outcome was. We are trying to get her in the KAFO a little everyday. Hopefully she won't get tired of them.

    We are hoping to see a Shriners doctor to see if they can figure out what is going on as her tail bone appears off center and her one leg seems longer. I'm thinking it might not be so much about tightness and more to do with her lower spine. KKI mentioned it might be because of the hardware. Her doctor is ordering a full x-ray, but they have already x-rayed her in rehab and didn't find anything.

    We have the stair lift installed and she is transfering better than we had thought. Still a little concerned about her falling down the stairs while transfering, but if she is careful it shouldn't be a problem. She goes up and down the stairs all day.

    Raising Arizona Kids magazine will be scheduling a visit in July here at our house and plans on publishing an article in October just before we here in Arizona open our windows. I'm hoping this will save someone else from falling.

  10. #80
    Next year you might want to see if there are camperships available for her to be able to attend either day camp or sleep-over camp. More likely to be available through non-profit organizations such as Girl Scouts, Easter Seals, etc.

    You can also see if the swim program and your PT can work together on the billing issue by one making the other a subcontractor under their coverage, and billing through only one. It is done all the time.


Similar Threads

  1. Replies: 11
    Last Post: 08-21-2005, 07:56 PM
  2. Replies: 1
    Last Post: 11-15-2004, 10:19 AM
  3. Stem cells aid heart
    By Wise Young in forum Cure
    Replies: 0
    Last Post: 04-24-2003, 05:29 AM
  4. Evidence That Cranberry Juice May Help Fight Heart Disease
    By Max in forum Health & Science News
    Replies: 0
    Last Post: 03-28-2003, 10:02 PM
  5. Replies: 0
    Last Post: 10-20-2002, 01:14 PM

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts