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Thread: Man of Mystery

  1. #31
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    Exclamation Blood Test Results Are In!


    I have never used anything but a Mac. Started with a tiny 13" monitor and worked my way up to the current big screen iMac, which I'm not enjoying, as it has too many features I don't understand, nor how to work around them. But I'm stuck with it.

    Sounds like myChart has a "one size fits all" approach. Perhaps they need an articulate, experienced and computer literate mom of a child with special needs (aka YOU) to enlighten them that one size doesn't fit all, and that in your daughter's case, as well as the case of all other children with special needs, you need access to all of Caitlin's medical information. Protecting privacy is fine, however, I'd be quite concerned if my 12 year old child was discussing s*e*x with her/his pediatrician. I know I'm old ... but 12 is still so very young for that to be a medical conversation! I think the cut off should be 16, but then, as I said, I'm old.

    Nonetheless, in Caitlin's situation, I think you, as her parent and caregiver, should have access to all of her medical information. Exceptions can be made to every rule.

    When I am finally able to sign up for the medical portal, I have to lie and claim that I'm Jonathan to acquire access to Jon's medical records. That bothers me, although it doesn't bother the doctor. What's the point of the rule, if it can be circumvented by a lie?

    Maybe I should enlighten them, eh?

    (((((((Mary Grace))))))

    Nervousness is certainly understandable. Hope you can find some distractions. Maybe do something different and fun with Kathleen ~ some special treat or surprise to take your minds off of what's waiting. Praying for you all many times a day. I'll be in the waiting room with you on that day in spirit. Just imagine me sitting beside you holding your hand. I'll be there.

    ********** U P D A T E **********

    Normal temps continue!

    I called for the blood test results today:


    White blood cell count is normal, indicating no infection. Red blood cells (hemoglobin) is 9.8, which is fantastic for Jon. Last year at this time, he had been hospitalized with a major life-threatening tonic/clonic and pneumonia and his hemoglobin was 7.6, requiring a blood transfusion. Then that continued after we got home due to his antibiotic and the Synthroid, landing us in ER for a blood transfusion, which never happened.

    His Depakote and Dilantin levels are a bit above the top of his therapeutic range, and of course, this test is a week old now, so who knows what his levels are today?

    Those levels are the reason I called, because Jim reported to me this morning that at 1:00 a.m., when Jim was giving Jon his meds, Jon was nearly asleep and he had a 20-30 second seizure, consisting of raising up his left arm, turning his head to the side and staring. No facial grimace. Then he went right to sleep. This could occur every night, if we aren't in the room as he falls asleep. Typically, if we are in his room, he won't fall to sleep. He wants to fight it and stay awake to interact with us. We check him every 10 minutes, but a short seizure like that could have occurred a few times in 10 minutes.

    We have tried video monitors in the past, unsuccessfully, but perhaps the technology has changed since then, and we might have better luck.

    His urinalysis was clear. No UTI. YAY!

    So, we've ruled out everything. Which leads us back in the circle to the beginning ~

    The Mystery of Jon.

    Hmmmm ...

    Love & Light,

    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 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful Dad.

  2. #32
    Distinguished Community Member
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    I'm glad the blood tests are normal but sorry that they didn't get you any closer to an answer. I have the macbook pro and like it except for the weird features on the mouse pad. They try to make it like an iPad with the features I think. Any luck finding the Yogurt or a geneticist?
    Last edited by funnylegs4; 07-04-2013 at 12:44 PM.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films!

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