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Thread: little update...

  1. #1
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    Default little update...

    Been busy he past week since Kathleen was on winter break. We had a great week off. It started a day early since Valentines Day we got 2 feet of snow. Best of all she felt really good (knocking wood). She started out not feeling great but she got ehr period and after that she was good. We spent a day at the mall where she tested out a drum set. She loves the drums(music in general). But this actually got her left arm working too. Had lunch with a couple of friends from our Down syndrome group. ( a couple of her many boy friends). Went to a girls varsity basketball game with some friends. Visited my sister and her grand kids for a day. Visited a goo friend who is in a nursing home, she's 95!!! Kathleen and I used to take walks and we never made it past her house because she always called us in to sit on her porch for cookies or popcycles. We had a lot of nice "down time" too. She played Wii bowling, tennis, Mario cart and Just Dance. Watched a couple movies, and lots of singing. We planning an American Idol birthday party and my sister bought Kathleen a kareoke machine, lots of great talent invited.
    She's feeling good and her braces are fitting pretty good. At least she's wearing them. Her heel cord is very tight and this aloows her heel to pop out of the brace so I talked with the physiotrist and he will up the dose of botox hen she goes in for her shots next month. This should help. She is back to school today and happy.
    Kelly got a job! She will be working for NYS department of education. I believe she will be helping with district compliance with NYS education laws.
    Mary Grace

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

    What a wonderful, positive, upbeat update! Terrific news that Kathleen is feeling well and enjoying her life. And she's into drums? Cool. That's super that she used her left arm too. Drums can be played with one arm. I'm thinking of Rick Allen with Def Leopard. So a drum kit might be great therapy for Kathleen.

    The American Idol birthday party ~ what fun! I hope you are videotaping all of it. Great memories. Can't wait to hear how about Kathleen dancing the night away and outlasting all of the guests!

    Congratulations to Kelly on her job! District compliance ~ a girl after my own heart! Please tell her that I say, "Thank You, Kelly!"

    Just keep the good news coming, Mary Grace!

    Love & Light,

    Rose
    Mom to Jon, 47, (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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    Thanks Rose it feels really good to be able to share some good news. That's exactly who my husband thought of when he thought about the drums for Kathleen (she's wanted them for a long time). Yes it's an instrument that can absolutely be done with one hand. Over our break she worked on putting on her own shirt and she's doing fantastic with it. We've only been using a football jersey so far since it's big and it's easy to work with. Next we'll move on to a different kind of shirt. It's been so long since she's had a long enough stretch of feeling well in order to work on something like this. I will defin atly try and get videos of her party. We're very excited and it's still a surprise...
    I'm very proud of Kelly it's been a long journey but I know she will be a fair lawyer and put her skills to good use. She has watched me try to make sense of all the regulation that apply to special education and health care laws, so this is a perfect fit for her since she has always had a passion for this and any public service law.

  4. #4
    Distinguished Community Member andromeda31's Avatar
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    Hi!

    Congrats to Kelly on her new job! Sounds exciting!! An American Idol party sounds like a fun theme!! You'll have to put up a picture after. :) So glad to hear she is feeling good!!

    Lisa O.
    Lisa O: mom to Caitlin (14-CP, VA shunt, seizures), Brandon (12), Tyler (10), Logan (7)...my babies are all getting so old!!

  5. #5
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    Glad about the new job and that Kathleen is doing well!! Is she casted after her botox procedures? My friend with hemiplegia had to be casted for a few weeks after his botox.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

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