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    #16
    Originally posted by solarscar69:

    Rick, i hope your daughter is getting along well. I am sure she is still having wierd sensations still creeping up being so relatively early in the healing process. Hope she continues to improve. Take care!
    Thanks solar,

    She's doing good, it's just I want more return NOW!! The longer this recovery takes, the more anxeity I feel. Some days I feel so blessed, and other days I want to crawl in a hole somewhere and just cry.

    Last Monday was beautiful, weather wise (70). So after school, I had Sarah walk from the top of the driveway all the way to the house. She didn't want to do it, didn't think she could, and proceeded to cry and complain. But she did it, all 170 feet, plus two ramps. And you know, the farther she went, the better the steps looked. But man was she mad at me. But that's OK, I can take it.

    Sarah's limits, I think, are just as much mental as they are physical. Just because she couldn't do something a month or two ago, doesn't mean she can't do them today. I'm convinced that she doesn't know her limits, because she doesn't push hard enough to find out where they are.

    For instance, last night we were doing assisted sit-ups that we learned at Project Walk. After 3 sets of 12, we started talking about how she was always the class champ at doing sit ups in school whenever they did the Presidential Fitness test each year. She could do 50 in a minute. Anyway, she decided to see if she still had it and she gave me her stop watch to time her. Are you ready for this, she did 38 assisted sit ups in 1 min., and I wasn't helping that much at all, just for balance. Man, her face was red [img]/forum/images/smilies/mad.gif[/img] while she was going for it. When the time was up, I couldn't speak, all I could do was stare at her with the biggest smile on my face. Remember, she's T5. I got up and ran to go tell her Mom [img]/forum/images/smilies/eek.gif[/img]. Very cool.

    She's a tough kid, not much complaining, but isn't very self motivated for PT stuff.

    She's starting to notice the para belly a little bit, so I'm going to use her that to get her to do more ab work.

    But I tell ya, we need to get a PT in here to work with her soon. I'm no therapist and it's hard enough just being Dad (I've got 2 other younger kids), much less the 'slave driver' as well. We quit going to UVA (1hr - 1 day wk) when we got back from PW. We just felt the sessions were somewhat 'soft' and only lasted for 1 hr and was 50 miles one way. We're hoping to find someone who perhaps can come to the house or may be closer to home with a big emphasis on pushing her to get the most she can.

    I feel in my heart that the return is there for the taking, just got to go get it. And I've got this constant clock ticking in my head that time is working against us. That the window of opportunity for more return is slowly closing. Man, it's all too much sometimes. I just wish I could trade bodies with her or something. [img]/forum/images/smilies/frown.gif[/img]

    Oh well, I'm going to order a Total Gym today. She got a good workout on it at PW and I'm ready for more exercises.

    Sorry to be so winded, thanks for checking in on us.

    Your Friend,

    Rick
    Rick

    GO FORWARD! 2 FIGHT! PARALYSIS!

    Comment


      #17
      Rick, I so admire you. I think in your place I would be doing and saying everything you are doing and saying. The psychological issues are so complicated--and you never quite know what exactly it's like to be in her body, so the risk is always there that you might push too hard, or not hard enough. So frustrating!

      It doesn't help that Sarah is just at the age where she's supposed to be resisting your authority and testing your limits and flexing her own muscles. At some point, she's going to grab hold of this re-hab thing in a serious way, and not because you want her to.

      Your life and mine have strange parallels. I also have a 14-yr-old daughter. She was skiing alone in the high country with Bruce when he got hurt 4 years ago. As terrified as I was about his chances, I was equally aware that I had to pay attention to what the accident did to her.

      She had to go through 18 months of watching him struggle to breathe and sit up and e v e r s o s l o w l y get stronger, tiny bit by tiny bit--all the while grieving for her lost daddy and feeling a little responsible for what had happened. (The last run was her idea.)

      I wanted to push her into talking. Forget it. I wanted to push the two of them into somehow processing their joint loss. Not my call. I wanted so much to help her regain her old careless, joyful attitude. Impossible, for a long, long time.

      I've been thinking about your post in Caregivers the other day . . . hope everything's okay.

      Comment


        #18
        Its tuff. I know that i can be mental. I hated going to rehab early on since i am impatient anyways about stuff and the recovery was not coming back as fast i wanted it to. Right after a SCI the body reacts in a bad way and it feels so foreign so it takes a while and the worse the injury, probably takes even longer, but of course all SCI are all so different as is everyones recovery, function, pain, mental state and so on. It all kinda plays in together. It does probably seem like all you got to do is make her exercise, but its more. I can only imagine what she's going through being at that age since it really is when your anti-dad, in some form of degree or another. I am sure you remember being 14.

        Walking that distance seems like a very good thing and with work i can't see why it wouldn't still improve. Muscles waste quick when not being used so make sure shes doing something with them muscles. My legs atrophied in one month more then i could imagine and it took me a good 1.5 years to really come around and notice improvements in walking. Hang in there. You guys sound like you have a lot of faith. That is also good. Hope everything keeps moving along for your family and Sarah. Be sure to check in and let us know how shes doing. Be sure to tell her that there is hope. I was completely paralyzed with minor twitches from the waist down after my wreck. I am now walking unassisted all day long without any assitance at all. I worked hard at rehab, but the most came back when i was strong enough to do normal everyday activities. It will just start to snowball, but it can have a negative domino effect if she doesn't move them muscles.

        Exercising is generally not a fun thing for anyone even with AB people, imagine those same exercises being about 100 times harder then before.... You guys will make it. You sound strong and so does she. All the best to you.

        Take care Rick.

        *********************************
        - Some peeps are only alive because its illegal to kill them.
        http://www.adamsmith.name

        Comment


          #19
          Thanks Solar & Kate. I appreciate your support more than you can imagine.

          We're gonna be OK, I just need to hear it every once in a while. [img]/forum/images/smilies/cool.gif[/img]

          Rick

          [This message was edited by rickhemi on 03-11-05 at 08:41 AM.]
          Rick

          GO FORWARD! 2 FIGHT! PARALYSIS!

          Comment


            #20
            New picsin the member forum.

            Sarah continues to improve...walked on crutches for the first time on Monday (4/25/05). Pretty unstable..but looked good. It's coming...just gonna take some time.

            I hope everyone is well and blessed.

            Rick

            [This message was edited by rickhemi on 04-28-05 at 08:33 AM.]
            Rick

            GO FORWARD! 2 FIGHT! PARALYSIS!

            Comment


              #21
              Rick,

              You are right. It is hard to predict because everyone is so different. I can only relate my experience as a quad, 10 years post, who now walks unassisted. I got the vast majority of my return in the first two years. My insurance had a limit of only x number of PT visits/year, but I still thought I was progressing enough and getting enough benefit that I continued outpatient PT 3x/week (as did my PT) for 18 months post, paying out of pocket. Fortunately, with some budgeting, we had the means to do so. But........ the last of my recovery occurred about 6-7 yrs. post, it just slowed dramatically. I still have some deficits, but compared to no function, nada, below the neck initially (except I was breathing unassisted which I was told was a mystery why, C3-4, otherwise I would have died before help arrived), I am extremely grateful. As far as walking, people think I just have arthritis or an old injury. On a good day, less perceptive people don't even notice anything wrong. When I was looking for a new PT, I went to a general PT clinic but interviewed for somebody who had significant experience working with spinal cord injuries (she used to work on a SCI unit at a rehab facility). She turned out to be the best PT I had, including the ones from my rehab stay and oupatient clinic.

              I was 37 when I had my accident. I think age and being athletic played a factor in my return, and will with your daughter. I think motivation is key as well, and I think she has that advantage also, even if she had a bad day now and then and feels like giving up, recovery is exhausting and sometimes painful, that is normal. I spent about once a month in tears feeling sorry for myself. Then there is that unknown "luck of the draw" or "mystery" or "God" factor or whatever you want to call it with incompletes that causes more dramatic returns in some than others.

              My return was more linear. It was fastest in the beginning and gradually slowed over time. But with others it doesn't work that way. My 15 year old had a tennis coach intern last year that had broken her back leaving her paraplegic about three years earlier. She had been an Olympic soccer hopeful. She took her first steps at five months post, had just started regaining any function. I am very perceptive (I am an RN), and would never have known anything was wrong with her. She will never compete at the top of a sport, but I watched her play tennis, and she is pretty darn good, a solid recreational player. (By contrast, I can't play tennis at all, lose my balance, even though I played competitively through high school.)

              My physiatrist told me to give it two years, that is the time frame that most people need to see what they will end up with. I know that for a 14 year old, two years seems like forever though. Shoot, two days seems like forever. I wish you all the best of luck.

              Comment


                #22
                Thanks for the lovly post, very encouraging. I'm so glad to hear how wonderful your return has been. Your right, 2 yrs. does seem to be a long time, but that's ok, as long as she continues to improve. We'll be leaving next month to attend PW for at least two months over the summer, it should be a good trip, taking the whole family.

                Here's how SCI has tempered my wife and I: This past Sunday afternoon my youngest daughter (10) got thrown off the neighbors horse and broke her arm. When I got there, Hannah couldn't stop telling me how sorry she was (my wife has been very adament about no horseback riding) and was more worried about mom's reaction than her arm. After getting treatment, all Rosie and I could do was to fall to our knee's thanking the Lord that it wasn't worse, praising God that she fell on her arm and not her neck. Our persective has been greatly enhanced since Sarah's injury.

                Last week Sarah tried walking with crutches and did better than expected. It's nice to see her walking more upright.

                No B & B yet though. When did your's get better?

                Thanks again for sharing.

                Originally posted by dunwawry:

                Rick,

                You are right. It is hard to predict because everyone is so different. I can only relate my experience as a quad, 10 years post, who now walks unassisted. I got the vast majority of my return in the first two years. My insurance had a limit of only x number of PT visits/year, but I still thought I was progressing enough and getting enough benefit that I continued outpatient PT 3x/week (as did my PT) for 18 months post, paying out of pocket. Fortunately, with some budgeting, we had the means to do so. But........ the last of my recovery occurred about 6-7 yrs. post, it just slowed dramatically. I still have some deficits, but compared to no function, nada, below the neck initially (except I was breathing unassisted which I was told was a mystery why, C3-4, otherwise I would have died before help arrived), I am extremely grateful. As far as walking, people think I just have arthritis or an old injury. On a good day, less perceptive people don't even notice anything wrong. When I was looking for a new PT, I went to a general PT clinic but interviewed for somebody who had significant experience working with spinal cord injuries (she used to work on a SCI unit at a rehab facility). She turned out to be the best PT I had, including the ones from my rehab stay and oupatient clinic.

                I was 37 when I had my accident. I think age and being athletic played a factor in my return, and will with your daughter. I think motivation is key as well, and I think she has that advantage also, even if she had a bad day now and then and feels like giving up, recovery is exhausting and sometimes painful, that is normal. I spent about once a month in tears feeling sorry for myself. Then there is that unknown "luck of the draw" or "mystery" or "God" factor or whatever you want to call it with incompletes that causes more dramatic returns in some than others.

                My return was more linear. It was fastest in the beginning and gradually slowed over time. But with others it doesn't work that way. My 15 year old had a tennis coach intern last year that had broken her back leaving her paraplegic about three years earlier. She had been an Olympic soccer hopeful. She took her first steps at five months post, had just started regaining any function. I am very perceptive (I am an RN), and would never have known anything was wrong with her. She will never compete at the top of a sport, but I watched her play tennis, and she is pretty darn good, a solid recreational player. (By contrast, I can't play tennis at all, lose my balance, even though I played competitively through high school.)

                My physiatrist told me to give it two years, that is the time frame that most people need to see what they will end up with. I know that for a 14 year old, two years seems like forever though. Shoot, two days seems like forever. I wish you all the best of luck.
                Rick
                Rick

                GO FORWARD! 2 FIGHT! PARALYSIS!

                Comment


                  #23
                  Rick
                  The video brought tears. Good luck this summer at PW. We have just started hearing about the project maybe we can talk? We live in Colonial Hgts.Va. Not far from you,can I give you a call?
                  rmarchiano@micropact.com
                  Thanks

                  Comment


                    #24
                    Dunwawry,

                    Dont think age or athlitics has anything to do with revovery. I was 24 when I broke my back at T12. Be before my accident i was one the fittest people around i had just completed five 5km road races before my accident and was in top shape from going to the gym and swimming in the sea. I haven't gained 1 thing since my injury and there is nodoby that tried as hard as i did in phisio, I used to walk around the gym everyday with leg splints and too no avail did i get any return.

                    Comment


                      #25
                      Originally posted by EDD:

                      Dunwawry,

                      Dont think age or athlitics has anything to do with revovery. I was 24 when I broke my back at T12. Be before my accident i was one the fittest people around i had just completed five 5km road races before my accident and was in top shape from going to the gym and swimming in the sea. I haven't gained 1 thing since my injury and there is nodoby that tried as hard as i did in phisio, I used to walk around the gym everyday with leg splints and too no avail did i get any return.
                      Perhaps not in your case, but maybe in others, who knows. I believe for the incomplete, an "atheletic" frame of mind would definitely be a good thing. Sarah does not have one of these "athletic" minds,... yet. Therapy is hard work and she'd rather not have to endure this, but she also realizes that the road to recovery goes right through therapy and hard work, therefore she does her best.

                      Rick
                      Rick

                      GO FORWARD! 2 FIGHT! PARALYSIS!

                      Comment


                        #26
                        UPDATE:

                        Well, we're back to 600 mg Neurotin a day (up from 300). This past week end Sarah's left foot has been burning and tummy gets upset at nightime. The foot makes going to bed hard. The pain keeps her up.

                        We get warm towels and try elevate it. Seems to help a little.

                        I'm thinking it may have more to do with her bowel program. She uses a suppository every third day (but went 4 days last Saturday). Perhaps too much time in between. I think we're going to start giving her laxatives again (instead of just stool softeners) and try to get a good flush out. Wife said last few times, while there was movement, not as much as she would have liked.

                        We're busy planning for our summer trip (2 months) to So. Cal. to attend PW. Leaving 6/12.

                        Let me know if ya'll have any input in regards to the foot thing.

                        Rick
                        Rick

                        GO FORWARD! 2 FIGHT! PARALYSIS!

                        Comment


                          #27
                          Avoid laxatives, but I would go to an every other day bowel program and see if this helps. Every 3rd day is too long for most people. A complete bowel clean-out every time she has a bowel program is not needed, and is not healthy in the long run.

                          (KLD)
                          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.

                          Comment


                            #28
                            Originally posted by SCI-Nurse:

                            Avoid laxatives, but I would go to an every other day bowel program and see if this helps. Every 3rd day is too long for most people. A complete bowel clean-out every time she has a bowel program is not needed, and is not healthy in the long run.

                            (KLD)
                            Will do, but there's nothing worst than sitting on the pot for 1.5 hr's with minimal results, which is why we went to every 3 days to begin with.

                            Rick
                            Rick

                            GO FORWARD! 2 FIGHT! PARALYSIS!

                            Comment


                              #29
                              Why does it take 1.5 hours? We are successful in getting the entire program done with most of our clients in 45 min. or less. Can you talk a little more about the regimen (meds, timing, technique, diet, etc.) that she uses? Perhaps we can make some suggestions.

                              (KLD)
                              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.

                              Comment


                                #30
                                Rick,
                                Glad to hear that Sarah is making great progress. I spoke to you right after she was diagnosed. Please feel free to contact me at mbrock@sci-step.com if you want additional ideas on things to do with her at home, especially now that she is using braces.

                                Amazing results come with hard work and dedication.We witness this first hand every day here and would love to help you fight for her recovery! Best of luck at PW this summer-I wish her the best!

                                Michele Brock

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