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Been Lurking - Mother of a T12-L1 injured in May

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    Been Lurking - Mother of a T12-L1 injured in May

    Hi there - my 26 year old daughter fell from a fire escape in the beginning of May and suffered a spinal cord injury at T12/L1. She had surgery to stabilize her spine and was hospitalized for 10 days, then transferred to a local rehab hospital, where she stayed until the first week in July with 2 weeks in a nearby hospital for fluid in her lungs.

    She's moved back home with us and is doing well. She is a paraplegic and has a good attitude and is complication-free except for frequent UTI's, which now seem to be under control with a low daily dose of Bactrim.

    I've learned so much from reading your posts on this message board as we've worked our way through these past 5 1/2 months. This is my first post as I thought of a few questions and want to help her maximize her recovery. Things are starting to settle down a little now that she's home and taking a break from therapy.

    One of my questions is regarding rehabilitation therapy. She just finished three months of outpatient PT and OT and wants to take a break until the beginning of the year. We learned a lot and she's able to transfer in and out of a car by herself now, which is a big accomplishment when we look back to our first outing. She's also stronger since she's recovered from her surgery. She has a workout routine developed by her OT, but is reluctant to join the YMCA with us because she knows most of the trainers and is hesitant to mix with social aquaintances from her life pre-injury.

    We worked with her physical therapist on an evaluation and the paperwork for a standing frame/glider is in the works. We think insurance will approve it because her insurance case manager has been a great advocate. I'm also looking at getting a tabletop hand cycle, similar to the one she used in rehab.

    We visited Kessler, but chose not to go there for rehab because we felt it was better to be close to home where friends and family could visit while she was an inpatient. I was worried about keeping her spirits up on my own if it was just me staying with her. Also, the rehab facility close to home encouraged family and friends to attend therapy sessions while Kessler didn't allow that. My daughter seemed to want us there to learn with her.

    While I'm not second-guessing our decision, I'm wondering if there's anything we missed and should research and work on that she would have gotten at a world-class rehab facility. I want to make the most of this first year of recovery because I know it's important.

    She's not getting much return of sensation or function so we know she may not be walking until there's a cure, but we want to do what's best until that time.

    Thanks for any feedback you can offer.

    Hi and welcome to Care Cure. So sorry to hear about your daughter. I know others will post along with the SCI nurses. She is so newly injured that there is no way to know what she may get back. I do know that your daughter needs to work as hard as she can for as long as she can. It's a long journey but with some luck, your daughter, my son, and many others will get out of their chairs sooner than later. Best of luck to all of you!


      Welcome to CareCure. Others here will be able to address your questions better than I, but just want to say that it sounds like your daughter is doing well for so recent an injury - what wonderful support she has in you!
      MS with cervical and thoracic cord lesions


        Hello. Glad you were able to find so much information here. It has been invaluable for me.
        It sounds like your daughter has made a lot of progress in a short time.


          would she be interested in joining carecure?

          sorry for what happened to your family.


            Recovery from a sudden injury is a shock and the resulting rehab, exhausting and...well, boring at times. I would really, really encourage her to continue her rehab and fitness, even if its only at a local center. If not worked, she may lose some of the ground she's worked so hard to gain. In addition to strength training, flexibility should also have a focus. Muscles get tight very quickly if they're not attended to. I've been working for 15 months to get to the point that I can take a normal length stride because of tightness. She is early in recovery, in SCI terms and she is young, too. Make the most of anything she has left. SCI recovery is a weird and variable science and you never know what might happen.


              Hi again and thank you very much for the responses and recommendations.

              She did in fact go to Sunnyview. For the most part we really liked it, plus the fact that she can continue on with a familiar place as an outpatient and will request therapists she liked a lot when she starts again after the first of the year.

              I've recommended she join CareCure, but she hasn't yet and seems content for me to share what I've learned. I think it would be wonderful if she joined too. She seems hesitant socially - doesn't want to have contact with casual friends from her life pre-injury, just family and a few close friends. She has gotten out a bit to stores with me and was in a wedding recently. She was a little dismayed to see photos from the wedding showing her in a wheelchair on facebook (posted by her sisters). I think she's handling things well, but has a ways to go.

              I tend to give the impression that she's doing really well and probably gloss over the fact that she has nerve pain because she takes some meds, but mostly just deals with it. Her physiatrist is planning on doing botox injections next month, so we're optimistic about that.