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Summary of last 10+ months. What worked for us. . .

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  • Summary of last 10+ months. What worked for us. . .

    I've been reading through our old posts “Heart Broken Daughter Recent T12” thinking how far we have come. I thought it might be helpful to those who are new to this to put together a summary of what has worked for us. I still feel new to this at 10+ months and are still learning. Keep in mind this is what worked for us given our situation.

    10 year old daughter - Injury - T12 ASIA A complete - Given no hope for recovery of any kind. “One of the worst they had seen” and we were told her cord was severed in the beginning, but after questioning the surgeon he stated he wasn’t sure. While in rehab she was able to feel cathing and some during the bowel program. She could feel cold hands upper left thigh at the hospital. She had a lot of issues with bladder spasms (due to UTIs) and pain in inner thighs (burning / bee stinging sensations) more pain in left. She no longer has pain and hasn’t had UTI since out of rehab.

    8 weeks - slight muscle movement in left outer thigh (ASIA A - complete T12))
    4 months - pull knee up on left a little (ASIA A - complete (functional L1))
    7 months - straighten knee and hold out straight on left - maybe movement in right inner thigh
    9 months - able to put weight on left leg without knee buckling; obvious muscle movement in inner right thigh to knee; noticeable hamstrings movement in left (ASIA B - incomplete (functional L1 on right; L3 on left) depending what doctor we see).

    What is working for us:

    1.Therapy – We got the typical “show you how to live in a chair” therapy at rehab and some after. We found that therapy is different for those labeled “complete” verses “incomplete”.

    a.Kennedy Krieger Institute (KKI) – The best thing we did.
    i.Showed us how therapy should be.
    ii.Gave us a plan to go home with.
    iii.Gave us prescriptions that would have taken forever to get from our doctor here.
    iv.Provided hope and motivation that we didn’t get from doctors or therapists here.
    v.First and only time she got a true ASIA exam.
    vi.Ask for a referral to stay at the Ronald McDonald house. They have a super Ronald McDonald house in Baltimore.

    b.Find a good therapist close to home that provides motivation and a good work out. We haven’t found anyone that compares with the therapists at KKI.

    c.Crawling – she likes to crawl. It is great therapy and gets her out of her chair.

    d.Lying on stomach – Important to keep her hips from being too tight. This has been an on going problem for her. We didn’t even know that it was important to lay on her stomach until we went to KKI. She was already tight at that time.

    e.Aqua therapy – She is learning to swim again. This is great therapy and has been a lot of fun for her. We were able to take her to aqua therapy at one location and physical therapy at another. The doctor stated that insurance wouldn’t cover these at separate locations. Find out for sure from your insurance company. We had to make sure they were billing it as aqua therapy only and insurance was fine with it.

    2.Case Manager – Ask your insurance for a case manager. Our case manager has been so helpful in getting our insurance to make exceptions so we could get her to KKI and is now helping push for more therapies than our insurance covers.

    a.Stander. For bone density and getting her up straight helps with tightness. We got the type with the glider that she won’t use as it stretches her hips too much. All the therapists stated that insurance wouldn’t cover this. Ours did without question. Check with your insurance, work with your case manager and get a letter of medical necessity. Go to Shriners. They will provide free equipment to children if they determine it is necessary.

    b.Second wheelchair for upstairs. This was actually more important than the stair lift as we found with time she could scoot up each stair. When she got to the top she really needed the chair. (Insurance won't cover so we purchased a TiLite through ebay for $800)

    c.Leg Braces - Although she only uses them in therapy, it provides us hope that she will be able to use them functionally at some point. She now uses an AFO on her left and a KAFO on her right.

    d.Massage Table - This made lying on her stomach easier and we can give her a good stretch without getting down on the floor. At first we had to pick her up and lay her on the floor to do stretching. (Insurance won't cover)

    e.Knee pads – She does a lot of crawling. We found the best knee pads are the soft ones they use for volleyball. We have to wrap the top and bottom with ace bandages because her legs are very thin and the pads don’t stay in place.

    f.Electrical socks - Our daughter wears these at night. They are thinking they might help encourage return. They use them frequently for those with diabetes and other issues resulting in poor circulation. She wears them almost every night. We found that these have helped a lot with any sores on her feet/legs. Before the socks her sores wouldn’t heal easily. After the socks they heal like before her injury. She gets sores easily on her feet and ankles when she crawls.


    a.Speedy Catheters. These are little self-lubed catheters that can be used sitting on the toilet. These are new this year and didn’t come out in her size until earlier this year. They come in a little green compact. Easy to put in purse.

    b.Poise Pads – Since she is a lower level injury and flaccid she leaks urine easily and wears these all the time. We are getting these from our medical supplier (PRN) and insurance is paying for them.

    c.Travel/bathroom bag – They kind that has the hook. She puts all her bathroom supplies in this and can hang it in just about every bathroom. Very helpful at first when we were figuring out all the bathroom issues. We have one she keeps at school, one hanging in her bathroom at home and one that stay with her wheelchair.

    d.Cathing at first was very difficult and went through many stages. First we did the cathing while she laid on the bed like they did at rehab. Then we started from the wheelchair having her scoot up to the edge of the chair using an extension. We found the catheter with a bag useful when going out so she wouldn’t have to sit on the toilet or deal with the extension. Then we helped her on the toilet and with a mirror she was finally to cath herself. She is now able to cath herself without a mirror on the toilet without any help.

    e.Soft toilet seats. Replaced all the toilet seats in the house with soft toilet seats. It took her awhile to be able to balance and problems because her butt is too small for the toilet. We got a ring reducer, but found it was impossible to do bowel care with the ring reducer.

    f.Roll in shower and sink she can get under. Roll in shower gave her the ability to take a shower without help. We have a padded shower bench she transfers to. The therapists also stated that insurance wouldn’t pay for the shower bench, but they did. Make sure to get a script for everything just in case.

    g.She does her bowel program daily. We don’t miss a day or she would probably have an accident as she is flaccid. We learned that because she is flaccid and doesn’t have a reflex that the best way to do bowel care is to just remove stool. She now does this herself. We no longer use the magic bullet or stool softeners. She had trouble with accidents when on antibiotics. We got some acidophilus at the drug store and no longer had the problem.

    5.Other great stuff

    a.Stair Lift - She uses this daily and likes to sleep upstairs with the rest of us even though we have a guest bedroom downstairs. We purchased one from Silver Cross and installed in ourselves. $2,000 instead of $5,000+.

    b.Extension on shoe. Since her left leg is shorter (due to tightness). The extension on her shoe helped a lot when walking in the braces.

    c.Wheelchair breaks that are rounded. The ones they first put on her chair were difficult to maneuver over when transferring.

    d.Goals – we created a goal chart for therapy to use. She gets little gifts when she meets goals. Before this the therapist didn’t push her and she didn’t push herself. The therapist now wants to help her met her goals and works her harder. She typically gets at least 2 to 3 gifts at each therapy session.

    6.Shriners - The doctors at Shriners spent more time with her than any other doctor. They added the extension to her shoe that we didn't know she needed. They provided their services free and would have provided a free stander if we didn't already have one. They made her a different pair of braces that should give her more hip support. Consider going to Shriners especially if you don’t have insurance or insurance that won’t cover a stander or other equipment. They pay for transportation to get their and you can request a stay at the Ronald McDonald house (not as good as the one in Baltimore). Of course, Shriners is only for children.

    Most of this we learned here on care cure.

    I tried not to forget anything, but one thing that others would say is missing from this list is pressure sores. We have been reminded over and over again what a big issue pressure sores are. This is the reason for the padded toilet seats and the good cushion on her chair. We also purchased a foam pad to put on her mattress. The only sores she has have, had been on her legs and her tail bone gets red now and then when she scoots around too much on the floor. Besides that pressure sores have not been an issue for us. We are grateful. I’m guessing her age and how active she is makes a big difference. Plus I think the socks make a difference.

    Where we are today:
    We are scheduled to go to Project Walk in October. We also plan to check out a place in Provo Utah called “Sit Tall Stand Tall” as we have relatives we can stay with in Utah. They have some clients that were able to walk in leg braces who haven’t had any return. Would like to go back to KKI, but decided that Project Walk will give us a different view and learn new things. We are giving her Baclofen for hip tightness. Just started and not sure how well this will work. We are still struggling with SCI and can’t wait for the day that it doesn’t absorb our lives. It has gotten easier, but still heart broken. Looking back I see that she has come a long way!
    Last edited by gcblarsen; 09-20-2009, 07:22 PM. Reason: update format

  • #2
    Great summary- everyone should journal like this.
    The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.


    • #3
      That was a wonderful post. Thanks for sharing your life over the last while.


      ... rolling since 1989

      BE NICE!It's free

      P.S. ~ I have "handicapabilities"

      TWITTER: @MacBerry


      • #4
        What a wonderful post.It should give hope to many others by stateing you have to keep up on it. You played all your cards just right, and of course she did all the work. With the right attitude you can accomplish almost anything. What a sweetheart, and you guy's are the heros here, you dedication is overwhelming. You go girl, and never let anybody tell you you can't, do anything. I beleive you can do anything you set your mind to. Good luck, and hard work.


        • #5
          You and your daughter have a very positive and refreshing attitude. Great post. Thanks for sharing this with us.
          I refuse to tip toe through life, only to arrive safely at death.


          • #6
            Really appreciate the feedback on this! Hoping the summary will make a difference for someone else as different as we all are.


            • #7
              Awesome work. I can't imagine parents who are more dedicated than you. I look forward to being such a comprehensive caring parent one day.

              - K
              C5 Burst Fracture - Motorcycle - June 21st, 2009 - Father's Day.


              • #8
                I was told the same thing at shock trauma. He will never walk again. There is a 2 out of 13 % chance that he will gain anything back. I looked at the surgeon and said :well somebody has to make up that percentage: He looked at me like i was crazy. Evan has converted from a complete to an incomplete and his level went from a c4 to c5. He can now raise his arms way up over his head. He can put his arms in front of himself. He ever so slightly started moving his feet side to side, just a hair . It;s a start, he attends kki for therapy. He was just on the home program and will soon return for more advanced therapy. Your little girl is beautiful. I have no doubt that she will continue to make improvements. After all ,the docs don:t know everything!


                • #9
                  Hi Jessica's mum, Your post is what i have been searching for since my daughter Noirin's accident in May last year- THanks alot-it has answered so many questions and it is great to come across someone so willing to share the info and also so active in progressing. I have met another mum of a boy with sci who is also of the same frame of mind but there are definitely issues that will arise with noirin in the future that i worry about (like self-catheterising) and hope i can turn to you.
                  Noirin will be turning 6 christmas eve and has a T3 SCI after a car accident last year.
                  I have been reading your threads for a while now and it you have guided us without even knowing it.- we spent 2 weeks in kki in july and are delighted with our homeprogram but struggle to keep up with it-pressures of normal family life-we have a 3 year old as well and trying to encourage Noirin to take part. Sometimes it seems i am forever inconveniencing her- catheters,suppositories, standing, stretching,e-stim/exercise/bike (RT300) and all she wants to do is draw,play with dolls, watch t.v, relax on couch. She continues to go to ballet ( which she had joined before) and is very good at adapting it, goes to tin whistle class but her new love now is horse riding. WE have a prototype of an adapted saddle and now only need a day that doesn't rain to try it out! It rains alot here in Ireland!
                  We also went to zurich in switzerland to try the lokomat and it went well but as noirin has a complete sci we weren't given much hope that a course of lokomat training would benefit. However after 5 mins of locomotor training in litegait she gets AD. So now we try to step her with a mobi-stroller, TLSO,AFO,s and knee immobilisers while we await RGO,s. WE were provided with thorocolumbar HKAFO's in the rehab hospital in England that she went and a swing through jump was encouraged-2 legs together.
                  WE really haven't seen any return but she is getting more confident, stronger and independent and she is generally content and has a real can-do attitude.
                  WE put a through-floor lift in and an aqua-swim pool (thanks to fund-raising) but the pool isn't ready to use yet but hopefully soon.
                  I am really interested in the socks you metioned and will try to source them and i have been struggling to get a toilet aid with a tiny apperture that gives her enough support but allows her to transfer ( needs lifting on to a flamingo at the minute) but also allows access for bowel and bladder management.
                  I could write a book on everything we have learned the hard way and am so glad i was told about this forum and just wonder are there enough children out there with sci to have a seperate forum.but then again,i really welcome feedback from people that are living with an sci as it often throws a totally different perspective as to the one i have as carer and gives me encouragement and hope.
                  A huge thankyou once again. Sonia.


                  • #10
                    She continues to go to ballet ( which she had joined before) and is very good at adapting it, goes to tin whistle class but her new love now is horse riding. WE have a prototype of an adapted saddle
                    I'm impressed that she is still doing ballet and horse riding. You have accomplished a lot! The horse riding would make me terribly nervous. Beside that, I'm terribly alergic to horses so I wouldn't be able to go.

                    I'm glad my posts have been useful to you. You are welcome to PM me anytime.

                    I am really interested in the socks you metioned and will try to source them
                    The link below. They have a contact page and should be able to help you locate a pair. I contacted them just telling them how much we like them and they responded quickly.

                    We have now hit our 1 year (November 9th).

                    We went to Project Walk. She LOVED IT. The hotel with the swimming pool had a lot to do with that. They were able to get her hips from a 30 degree tightness to 10 degree tightness. Our therapist was really impressed when she got back and has changed somethings for the better. Project Walk focused a lot on muscle groups to encourge more strength and recovery.

                    Soon after we returned from Project Walk we noticed more return. I've added 12 months to the previous list:

                    8 weeks - slight muscle movement in left outer thigh (ASIA A - complete T12))

                    4 months - pull knee up on left a little (ASIA A - complete (functional L1))

                    7 months - straighten knee and hold out straight on left - maybe movement in right inner thigh

                    9 months - able to put weight on left leg without knee buckling; obvious muscle movement in inner right thigh to knee; noticeable hamstrings movement in left (ASIA B - incomplete (functional L1 on right; L3 on left) depending what doctor we see).

                    12 months - Able to pedal a stationary cycle slowly. More hamstrings in left. Able to pull up right knee. Very little glutes.

                    Balancing daily life with therapy continues to be a struggle for us also. I give her choices and if she just refuses I remind her of the importance and ask if she can do more tomorrow. I never force her as I've learned that never works. I try to encourage by playing a game with her while she is in her stander or just suggesting that we could do some e-stim will just sitting on the couch. The only thing we always try to do daily is stretching and putting on her e-stim socks before we go to bed. Some weeks all she gets in is therapy with her therapist.


                    • #11
                      hi God bless your child! i was told my spinalcord was severed and when i went to rehab the doctor there told me i was asia b but its been 2yrs and a few months but did not receive any recovery yet but i went bact early in my injuries to the surgeon still believes im asia a due to what he seen, even though i told him what my doctor in the rehab explain to me what makes me a asia b. however, my thoughts and prayer are with you and your child, takecare!
                      life begins when you walk in spirit