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Thread: May update...

  1. #1
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    Default May update...

    We are well... The weather is not what we would expect for May, it's been cold and very rainy. this hinders our bike rides and walks for Kathleen and I.
    Kathleen had a recheck at Shriner's hospital. All is good she saw a new Dr. (the one who did her surgery retired). She did a great overall orthopedic exam. Noting how loose her hips are she did an xray which was ok, but something we need to keep an eye on. Kathleen has had some redness and pain in her right foot from her AFO so they're making a new one. We'll pick this up the end of the month. We can't say enough good things about Shriner's. They Make every step as easy as possible. This appointment didn't even take us 2 hours and done locally would have meant several appointments each being at least 2 hours.

    Saturday we went to Boston Children's Hospital for a Moyamoya family symposium. It's always great to hear the cutting edge research for this very rare disease. The best part is seeing the surgeon Dr. Scott who saved Kathleen's life 15 years ago. He is amazing and remembers our family with such fondness every time we see him. We can never thank him enough not just for saving her life but for the kindness he showed our family at such a difficult time. I believe he gave her the best possible outcome given her unstable condition.
    This is a picture of her and Dr. SCott.
    V__2614.jpg

    Mary Grace

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

    How wonderful to hear that you are all well. I hope that the weather will warm up for you soon. But not too much.

    Every medical facility could take quite a few lessons from Shriner's, as you've described the care Kathleen has received from the beginning to be outstanding.

    Dr. Scott's kindness and caring are apparent to me in his expression in the photo. Devoting his time and energy to a rare disease speaks volumes about his character.

    I'm so grateful that you have such great medical care for Kathleen. May it continue to be so forever.

    Love & Light,

    Rose
    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
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    Aww! What a great picture! So Doc Scott is the one who saved Kathleen when she had the stroke(s)??

    I'm doing good. I have another little job and I'm about to go into a different stage of film production.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

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