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Check Out My Girl....Part II

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    Check Out My Girl....Part II

    Hi Folks,

    It's me again, since we're about 2.5+ yrs post, I thought now would be a good time to go ahead and move Sarah's thread over here. But if you'd like some background,here's /forum/showthread.php?t=37552 the link to my original thread.

    This is about the time of year that I start focusing on rehab for the summer months when Sarah is out of school and the competition for her time is not as hectic.

    We've decided not to go back to PW this summer (we've been the last two summers for a total of 20 weeks so far). I think since we brought her personal trainer out there last yr for some training, we'll rely on her for the most part. During the school yr., Sarah trains at the local YMCA 2 days a week (1 hr sessions with her trainer), but we'll try to pick it up to 4 days per week with 2 hr. sessions over the summer (this was her schedule while at PW).

    I'm debating whether or not to visit the Kennedy Krieger Institute for a week or two over the summer for a couple of reasons. First, being a medical establishment, they'll give Sarah a good look over (MRI, physical, etc.) just to make sure everything is doing well. Secondly, they specialize in pediatric SCI research, maybe they could show us something we don't already know. And thirdly, it's looks like my insurance will cover it. While I would love to go and check them out, I'm having a hard time getting Sarah on board. She hasn't liked doctors ever since one screwed her up, and she has a phobia with needles (she freaks at the sight of 'em) and, of course, doctors = needles. I've gotten KKI to send us some literature, I like what I see, but Sarah hasn't taken time yet to look it over yet. Has anybody here had any experience with KKI? I'd really like to here from you!

    Sarah is driving now on a limited basis. She has her learners permit and we put hand controls in the family van. She drives very well, very cautious, but she's not driving very consistently, only once a week or so. It's just not high on her priorities. She's taking her Driver's Ed through a coorespondence course, but rarely has time to put into it, she's started back in Nov. and has completed a little over 25% of it.

    She's as busy as ever. She's very much into her studies (10th grade), with an eye towards college. She's takes her grades very seriously and is top of her class. She's takes every AP course the school offers and has found love.......are you ready for this.....it's name is biology. She's fascinated with it and is 99% sure it will be her major. She's visited a fairly local private college, Randolph Macon in Ashland, VA (bout 45 min from home). Her honors chemistry class took a field trip there last fall to sit in on a lecture (though the professor had a last minute scheduling conflict), and so they got a grand tour of the facility, she loved it, very compact. But VERY expensive, so we'll see.

    Tonight we'll be attending the school's basketball sports banquet. Sarah has been the asst. coach for the girls team ever since she got hurt (she used to play), Hannah (younger sis) played for her and Jesse (brother) played for the boys team. I'm glad the season's over, too much driving. Between school, basketball (2 games a week + practices throughout the 4 mo. season), youth (church), and therapy, Sarah's has very little down time. Hopefully things will slow down a bit now that BB season is over. Here's a pic of the girls team, Hannah (sis) is in the middle row, second from the left. http://salemchristianschool.com/sports.html

    Physically, Sarah is doing all right. She walks with her walker to and from the car to the house, in between some classes at school, and into the YMCA (with crutches). She gets up on her feet at home (walker) for 25 min. spells about twice a day, though only when time permits. I wish she was up more. She's noticed a bit of a tummy bulge and has been focusing on what she eats and does lots of sit ups and such at therapy. I've told her it goes away when she stands up, so that should be a focal point as well. But she feels she can't accomplish anything while standing, so anyway. Her left leg looks good, very responsive, but her right leg still is lagging somewhat. I can see it mostly in the right ankle, while she doesn't have drop foot, it does dangle a little when she gets in the car. I've noticed that when she sits, her thighs tend to flatten out a bit, more than normal. But standing/walking more could probably fix that.

    She still takes diptropan, but that's it. I wonder if that med would mask any return to the bladder/bowel?

    Well, that's about as up-to-date as I can get everyone for now.

    Later,
    Last edited by rickhemi; 9 Mar 2007, 12:21 PM.
    Rick

    GO FORWARD! 2 FIGHT! PARALYSIS!

    #2
    Rick;

    Thank you for the update. I am glad Sarah is well and being an ornery teenager. That is a sign of good health.

    As to KKI. At last year's Rally they held an Open House that impressed most visitors. At this year's Rally, there will be another demonstration of their activities. This time, however, it will be in DC, not Baltimore so that Rally goers will not have to find transportation. Also, Dr. John MacDonald, from KKI, will be in attendance at the Symposium and giving a presentation.

    We would love to see you. The Smiths will be there.

    John

    PS: Hi to Rosie and the kids.
    "Hope is like a road in the country; there was never a road, but when many people walk on it, the road comes into existence." Lin Yutang

    Comment


      #3
      Hi Rick

      Wow looks like Sarah is keeping you hoppin'...LOL When you said she found love...I was thinking oh no she has found a boy to wrap around her little finger. Biology is a much better love at her age anyway. I have really enjoyed reading Sarah's progress. She sounds like such a joy...and top of her class, WOW.

      Thanks for sharing the picture. She is beautiful. I am so happy for you and your family. Good luck with summer planning....
      T12-L2; Burst fracture L1: Incomplete walking with AFO's and cane since 1989

      My goal in life is to be as good of a person my dog already thinks I am. ~Author Unknown

      Comment


        #4
        Rick~ I sent you a private message with info on my experience. I ditto John's suggestion.
        Every day I wake up is a good one

        Comment


          #5
          Rally sounds great!

          You're right, the rally would be the perfect place to check out KKI. I've checked the calender and that's the same week that Sarah will be taking her SAT's (the annual Stanford Acheivement Test's). These monitored test's are very hard to get moved around, something we'll need to start praying about.

          The wife and I and Sarah had our first, in depth, talk about KKI last night. Sarah dug her heels in and it got a little ugly, yet both Rosie and I are united in this, and that's usually enough for Sarah to go along. God is good and we just need to give it to Him. I think the rally would be a great ice breaker with KKI. Pray, pray, pray.
          Rick

          GO FORWARD! 2 FIGHT! PARALYSIS!

          Comment


            #6
            you got it.
            Every day I wake up is a good one

            Comment


              #7
              Rick--glad to hear that you and your little girl are doing well. Your posts are very encouraging. Your family is in my prayers.
              Daniel

              Comment


                #8
                Rick, does Sarah use an AFO? I ask because Bruce has been in one for years now, and one of the things it does for him is keep his right toes from dragging--also stabilizes his knee.

                I'm so glad to hear she's healthy and living her life with so much enthusiasm! Well done, all of you.

                Comment


                  #9
                  Originally posted by kate
                  Rick, does Sarah use an AFO? I ask because Bruce has been in one for years now, and one of the things it does for him is keep his right toes from dragging--also stabilizes his knee.

                  I'm so glad to hear she's healthy and living her life with so much enthusiasm! Well done, all of you.
                  Hi Kate!!

                  No, Sarah has never used any type of brace. At PW we were told that with Sarah's good return, a brace may get in the way of muscle strengthening, so we stayed away.

                  But now we're approaching the 3 yr mark (7/28), mayby it's time to see if a brace would help the right leg be more fluid and natural. Perhaps this is another reason to visit KKI.
                  Rick

                  GO FORWARD! 2 FIGHT! PARALYSIS!

                  Comment


                    #10
                    Originally posted by rickhemi
                    Hi Kate!!

                    No, Sarah has never used any type of brace. At PW we were told that with Sarah's good return, a brace may get in the way of muscle strengthening, so we stayed away.

                    But now we're approaching the 3 yr mark (7/28), mayby it's time to see if a brace would help the right leg be more fluid and natural. Perhaps this is another reason to visit KKI.
                    Rick, you should check in with Bruce about this; I know the brace makes it possible for him to get around as well as he does. It helps keep his body aligned properly, which prevents all kinds of problems.

                    Comment


                      #11
                      singing, the Miami Project, KKI, and first job...

                      You'd think it's been longer than 3 weeks since my last post, but here the latest....

                      3/17 - The kids' school gala/auction fundraiser was a hit, Sarah sang lead with her group from school, Sacrifice of Praise. I didn't realize they actually had a name until they were introduced. They've been singing together for quite some time, during Wenesday chapel at school. She did great, I'll try to get some pics up this week.

                      In mid March, Sarah was invited to participate in an upcoming clinical trial down at the Miami Project. It was on Locomotor Training Technics and was to last 14 weeks, beginning April 30. Sarah prayed about it and decided against it for a number of reasons:

                      #1 - 2 of the 4 random groups she could be placed in included FES. Sarah's experience with e stim has been one of pain. Her legs are hypersensitive and do not react well to FES. MP stated they had no control over which group she would be placed in, and understood Sarah's concern. They've seen that before.

                      #2 - she'd have to leave school a month early, which, to some kids would be a reason TO go. But it would break Sarah's heart, she loves school.

                      #3 - another summer away from home. The last two we've spent in CA attending PW. And Rosie and I kinda promised her we'd stay home the next one.

                      So we've decided to check out KKI. We go up for testing in early June and hope to squeeze in a couple of weeks of therapy over the summer. Cheesecake and Pat Rummerfield called me and were VERY encouraging, thanks for caring so much. She'll also pick up the pace at the YMCA, 2 hr sessions 4 days a week.

                      Last Friday and Saturday we had our big easter production 'The Gospel of John'. Sarah sang in the choir, Hannah helped back stage, Jesse was a villager, and I was the lame man healed by Jesus (I'm pretty good at lameness). It was great fun, but after 3 performances, I'm glad it's over. Too many practices.

                      And lastly, Sarah called me at work yesterday to announce she got her first job .... she'll become a tutor for an 8th grader struggling in pre-Algebra. His math teacher recommended Sarah for tutoring, and his mom met with Sarah yesterday about the offer. $10 an hour, not bad. Considering my first job was busing dirty tables at the local seafood house for $3.50 an hour, I was impressed. She starts this week and she's looking forward to it.

                      Sarah is driving more now, on the way to the YMCA yesterday, Sarah asked about getting a car over the summer. I'm not sure I'm ready for this......

                      Thanks for listening......God is Good, ALL the Time.
                      Last edited by rickhemi; 5 Apr 2007, 9:41 AM.
                      Rick

                      GO FORWARD! 2 FIGHT! PARALYSIS!

                      Comment


                        #12
                        oopps
                        Last edited by rickhemi; 5 Apr 2007, 9:38 AM. Reason: mistaken double post
                        Rick

                        GO FORWARD! 2 FIGHT! PARALYSIS!

                        Comment


                          #13
                          I know exactly what she means, that being upright prevents her from getting anything done. I'm the same way, and finally accepted it. If I'm upright, I'm working out. I hope she's not forced to accept it. It's just a fraction of return from those that walk functionally, but that fraction has kept me mainly sitting.

                          Sounds like she's doing great. Such good news. Good luck with the KKI idea, and I hope yall come to Working 2 Walk!
                          Blog:
                          Does This Wheelchair Make My Ass Look Fat?

                          Comment


                            #14
                            Rick -
                            I am so happy to hear the great update! And I am glad Sarah has agreed to check out KKI.
                            Say hello to everyone for me
                            Lindsay

                            Comment


                              #15
                              Rick-
                              I just read your updates on Sarah...sounds like she is doing fantastic! Glad everything is going so well...I have to second the recommendation for some AFO's...I exert A LOT less energy standing/walking with them than I did without. My gait is also more proper...They help to align the ankle to knee to hip, even though they only physically go to the mid ankle. Mine are made by Richie Brace and have the dynamic assist on the ankle.
                              'Chelle
                              L-1 inc 11/24/03

                              "My Give-a-Damn's Busted"......

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