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Thread: Part 3: Fairness in Policymaking for our families

  1. #1
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    Default Part 3: Fairness in Policymaking for our families

    http://www.donnathomson.com/2012/10/...family_16.html

    with a lovely photo of Nick at our local community centre during the great ice storm of 1998! Hope all my friends here are having a great day!
    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


  2. #2
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    ((((((Donna))))))

    AMEN! You said it all there!

    Here's an interesting article about how much moms are worth (salary-wise):

    http://www.salary.com/what%2Ds%2Da%2...h%2Din%2D2012/

    You are so blessed to have had that Centre. What a wonderful place.

    How is Nick, and did you learn anything from the doctor?

    Thinking of you ~

    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.

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    Hi Rose! The doctor was so rude! He and his resident (just as bad) made a big fuss about the number of people with us (me, Jim, Josh-Nick's full-time days caregiver, and head nurse from Nick's care home) plus he fussed about the size of Nick's chair. The resident took the WORST history I have ever seen, then they kept us waiting for way over an hour with Jim and Josh in the waiting room (they were kicked out). And when the doc did reappear, he just said, "you'll have to live with the symptoms, I am expert in motility but your son is too complex". We were all fuming of course. So, forget him and on to a neuro. I'm going to Vancouver this morning to give a speech at the ACL out there, but Crystal our nurse will be following up on a new neuro because our old retired. Sheesh, sometimes the world needs a course on manners, eh Rose? Love you!
    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


  4. #4
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    ((((((Donna))))))

    I'd say this "doctor" needs a course on more than manners.

    How about a course on compassion, caring, concern? How about a course on how to use one's expertise in solving "complex cases?" How about a course on acknowledging that, because he's "complex," Nick has several people intimately involved in his care, who are deeply worried about him?

    Is there some authority to whom you can issue a complaint about this doctor and his resident? Can you ask for a second opinion and a referral to a GI, who isn't afraid to think outside of the box with a "complex" patient?

    This makes me want to scream, Donna! Of course, Nick is complex. So, the doc throws up his hands and gives up, without even attempting to discern what might be causing these episodes? Does he do this with all patients, who don't have an easy fix for their problems?

    He complained about the size of Nick's chair?! How did you manage to keep from slapping him straight to Antarctica? Wow. Good thing I wasn't there! I'm not sure that I could have contained my outrage at the pompous jerk.

    Nick needs a new GI and a new neuro. I hope Crystal can do some background/reference checking to find you two jewels to make up for this piece of lead.

    Meanwhile, is Nick still experiencing the episodes? If so, I recommend getting some blood levels on his seizure meds to see whether he's in therapeutic range. I always start there. Nick's general practitioner should be able to order the blood tests, while the neuro search is ongoing.

    On the left coast today, eh? Hope you don't run into any weather fronts. A friend in Oregon told me that there's a cold front and snow heading their way. So, I'd expect that to go even further north.

    Safe travels to you, my friend, and I'll be praying for doctors, who aren't afraid to help dear, sweet Nicholas, and who will treat him and you and Nick's "entourage," with respect and kindness.

    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.

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