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Thread: Update...

  1. #1
    Distinguished Community Member
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    May 2008

    Default Update...

    I'm pretty sure that Kathleen has no appointments this week!(unless I forgot to write one on the calender) That's amazing! Last week she saw her surgeon for the cecostomy and she changed her mic-key button. We don't have to go back for 6 months. We also saw the orthotist and she made the change on her KAFO ( a soft plastic part on her ankle) hoping ot hold the foot in the brace. She wore it Sunday bowling for about an hour. Her heel was pretty red and a bit swollen. She refuse to put it back on. she complained a lot about her left leg after that. I don't think it held her foot in which means it moves in and out of the brace. We'll try again if I can get it on her.
    Last Friday we had a dinner to go to for Kelly. She got an award for her volunteer work with The Bus Stop Club. It's an organization for siblings of children with disabilities. She runs their activities. Kathleen danced for hours! She especially loved dancing with another mom we met (total stranger) who turned out to be an OT and has a daughter with cancer. She really gets a gut feeling about people and either loves them at first sight or keeps her distance. Here's a couple pictures from our fun night out. A family picture, a picture of the mom she danced the night away with, and one of her and her brother Patrick.
    Mary Grace

  2. #2
    Distinguished Community Member Earth Mother 2 Angels's Avatar
    Join Date
    Oct 2006
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    ((((((Mary Grace)))))) ~

    Thank you for sharing those wonderful photos of your beautiful family. Congratulations to Kelly on receiving her award for her very important and meaningful volunteer work. Kathleen is certainly in her element at this event! Darling dress ~ she looks so lovely.

    I hope Kathleen's KAFO will eventually "break in" so that she can wear it more comfortably.

    Be well and happy ~

    Love & Light,

    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful Dad.

  3. #3
    Distinguished Community Member
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    Oct 2006
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    Hi Mary Grace!
    Ohhh I LOVED seeing those photos! You all look gorgeous and so happy. I'm just like Kathleen, I LOVE to dance! You must be so proud of Kelly too - I really happy for you all that you had such a great night out. I send you a really big Mom to Mom hug and hope that Kathleen can wear her AFOs with no pain or swelling. Glad the appointments went well.
    xox Donna
    Donna, Mum to Natalie (22), ablebodied, kind and beautiful and Nicholas(26), severe CP, non-verbal, tube fed, multiple surgeries, chronic pain, happy kid except when the Liverpool football club or the Ottawa Senators Hockey Team are losing!
    Check out my blog:

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