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Thread: Check Out My Girl....Part II

  1. #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; 04-05-2007 at 09:41 AM.
    Rick

    GO FORWARD! 2 FIGHT! PARALYSIS!

  2. #12
    oopps
    Last edited by rickhemi; 04-05-2007 at 09:38 AM. Reason: mistaken double post
    Rick

    GO FORWARD! 2 FIGHT! PARALYSIS!

  3. #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!

  4. #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

  5. #15
    Senior Member Broknwing's Avatar
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    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"......

  6. #16
    Senior Member
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    Quote Originally Posted by rickhemi
    .

    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.
    I dont think we are ever "ready" to let them go Rick.... My baby just moved into my dads little trailer that sits directly behind my house. She was ready. Two very head strong women living in the same house becomes complicated. I miss her so much even though she is technically only out in the back yard..LOL She calls me more so i am thinking that the feelings are mutual even though she would really not want to admit it.

    She has had a blast decorating and putting together her own "home". As a parent, you learn alot about them when they start doing things on their own. You realize that maybe all that nagging and correcting really did pay off because she really is a good kid with a good head on her shoulder...LOL

    Sarah sounds like a true joy to be around....

    Good luck with all the trials and tribulations of having a daughter grow up before your eyes.... I feel your pain...LOL
    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

  7. #17
    I'm having difficulties uploading a pic.
    Last edited by rickhemi; 04-17-2007 at 09:28 AM.
    Rick

    GO FORWARD! 2 FIGHT! PARALYSIS!

  8. #18
    On the trip to KKI check out the youth sports program. Gerry and Gwena do an amazing job at providing wheelchair basketball, track and field, sled hockey and a number of other programs that Sarah may enjoy.

  9. #19
    Quote Originally Posted by sledhockeygirl
    On the trip to KKI check out the youth sports program. Gerry and Gwena do an amazing job at providing wheelchair basketball, track and field, sled hockey and a number of other programs that Sarah may enjoy.
    Great, thanks, we'll check it out.
    Rick

    GO FORWARD! 2 FIGHT! PARALYSIS!

  10. #20

    Kki

    Hi folks,

    We had our evaluations at KKI this past Tuesday and while Sarah didn't want to be there, the wife and I were very encouraged.

    OT - not much to report, Sarah still needs to work on being more independent in personal care, but she and mom will be working on this more over the summer. Sarah knows this and isn't wanting any help from outsiders on these issues.

    PT - took a full 3 hrs. Checked muscle strength from the toes on up. Went for a long walk (checking distance) and spent a lot of time standing and bending over, reaching here and there, etc. checking all her ranges and such. Final eval very encouraging, 90% of all muscles were level 5 (1-5 scale), and even the bad leg (right) were 4 and 5's.

    MD - another 3 hrs. Doc told Sarah "there is no part of you that is paralized, your muscles are working and they are strong, BUT you have strong tone issues". She went on to say that walking independently is very acheivable, if they can get the tone issues resolved. We thought for a long time that Sarah had some drop foot in the right side, Doc says not true, it's tone that is forcing her foot down and has her walking on her toes on that foot. Her left step is heel to toe (correct way), the right is toe to heel. Right leg is an inch shorter than the left. Doc says botox may be the answer, perhaps may need to cast the right foot for a spell to get the proper angle back, then look at some bracing. Doc sems to think if we get the foot right, things should progress nicely. No more foot dragging = no more hip hiking = more fluid steps = better balance = less wheelchair = who knows. WOW!! I wept the whole way home.

    While I think Sarah was encouraged, she's still giving us ole rebellious teenager act. It's not often we see this in Sarah, but looking back, it seems to show up whenever she's not 'in control' of her circumstances. But she's smart and I think she'll come around. She absolutely HATES needles and is worried that the cast will cause pain that cannot be easily alleviated (feet are hypersensitive, only area that is still painful). But the casting should take place in order to get the proper fit for bracing.

    We go back for 2 weeks in July.
    Last edited by rickhemi; 06-14-2007 at 02:01 PM.
    Rick

    GO FORWARD! 2 FIGHT! PARALYSIS!

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