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Thread: Kathleens update

  1. #1
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    Default Kathleens update

    Thought I would update with a few pictures. Kathleen has enjoyed the summer and now its already fall. The weather is great warm some days crips some days. She's been very busy concerts (Goo goo Dolls and Train) We saw the play Newsies. We had great vacation her favorite was the rides with a friend. She's been going to the gym. Going out with her community habilitation person. Going to the movies, bowling cooking bike rides the mall mini golf etc. Her health has been good (knocking wood). The switch over out of pediatrics is not fun! I still ahve yet to find an appropriate orthopedic Dr. We see her physiatrist this week maybe she can help. Shriner's only gave us a list which isn't helpful I can look up a list LOL. I got 2 pictures I'll try from my phone to put up a few more. Thanks for always being here and always sharing.Oh and she's been playing football too.
    Mary Grace





    IMG_20190726_1934021_rewind.jpgIMG_20190702_2009543_rewind.jpg
    Last edited by mg12061; 10-14-2019 at 04:27 AM.

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  5. #3
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    Hi Mary Grace and Kathleen! Oh how wonderful to see your beautiful girl having so much fun and being so active! I know what you mean about transferring from peds to adults. Ugh, it's no fun and everything is so much less welcoming and responsive to our kids. I hope you find a really nice ortho doc soon! Nick has been having a great summer/fall too. He's really happy that the hockey season started - he was too sore to go to the first game of the season but the management said he could swap for another game - yay! Sending you very warm wishes from Canada, 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: http://www.donnathomson.com


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  7. #4
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    ((((((Mary Grace & Kathleen)))))) ~

    What great photos! Kathleen is pure JOY, and she loves her life, that is so obvious in her radiant smile. I couldn't be more thrilled that she is happy and has had a marvelous summer. Concerts, amusement rides, football, the works!

    How is Kathleen doing with her drum set?

    Yep, transitioning to adulthood was awful for us too. Our kids don't have the umbrella of protection (like IDEA, for example) as adults. It's wrong and quite frustrating.

    Have you been researching potential ortho docs on line? I can go to our hospital's site and use their "find a physician" feature to look at docs within our system. Then, I Google them to look for patient reviews.

    We went through a few really terrible PCPs with our boys, before our wonderful Dr. A took over a retired PCP's practice. We just got lucky there. So many physicians refused our boys, because they didn't accept Medi-Cal. This was especially true of neurologists.

    Kathleen's physiatrist should be a good resource for a referral. I hope you find wonderful docs to take care of Kathleen. Nothing but the best for our beloved children, I say.

    So glad you posted, Mary Grace. Our love and prayers to you all.

    Love & Light,



    Rose
    Mom to Jon, 49, (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. Our Angel Jon received his wings April 2019. Now, they watch over Jim and me.

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  9. #5
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    Love the photos! And yes the transition to adult Drs is difficult for people with CP too. Good news is there is a large community of adult stroke survivors and many Drs are familiar with stroke in adults which doesn't seem to be the case for CP. Good luck!
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

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