update re:SHriners hospital visit etc

Discussion in 'The Watercooler' started by dreamer, Mar 25, 2007.

  1. dreamer

    dreamer New Member

    I had a follow up appointment for my son at SHriners this past week. He has been a patient there since 2001. We wound up there at my insistance when our pediatrician and psychiatrist kept trying to say my son did not potty train properly becuz I was a crummy mother and he toe walked just to make me mad. and he did not learn to ride a bike or tie his shoes cuz he was lazy.
    Shriners decided to rule out many many things. Spina bifida occulta (a mild form of spina bifida) - possible becuz of dhs exposure to Agent Orange.......cp becuz of being born 3 months early..........tethered cord- which might explain the toe waling especially........... due to my sons facial features, they also did a lot of metabolic and genetic testing. (he is my bio child and no, I did not use during preg or for the 20 years prior) They also tested for cystic fibrosis and PKU and maple syrup syndrome, fragile x, and a ton of other things, cuz some of those tests had been done previously with incolclusive result6s.

    So what they found in my son, back when he was 6 or so was...cerebal palsy, and heterotopia - which causes atypical seizures. SO he wore bilateral leg braces for 2 years with no benefit at all.........and they helped us develop a PT and Occupational Therapist (OT) plan.
    BUt now they have discharged us, taken him as far as they feel they can.which I guess is mostly ok good news......LOL. He still toe walks, but it is not as obvious and it is not severe enough to be a huge problem........
    SO, it is one doctor we will no longer be traveling back and forth to (well, 3 docs, his neuro, his ortho and his geneticist)

    My easy child is on spring break started Fri.and while she is working a lot this coming week, she is off tomorrow. I am gonna "kidnap" her tonite (when she gets off work).and take her on a 2 nite one day get away close to home (the car is acting up) and have her undivided attention just to myself. But we hafta be back home by Tues morning for the court case where she is a victim. (and then she goes to work)


    I still feel panic'ed and heartbriooke everytime the news tells more about the pet food recall. We are watching our pets very closely......but I am a lil embarrassed to say I cannot take them in to the vet just to be reassured-----I wish I could......but I know kidney failure can take a little while to show it's obvious symptoms, so I am still scared. SO I still cry and stuff when the news comes on, and I am playing like crazy with the 3 new kittens and my precious doggie.

    I have now been making my own dog food and the kitties are eating dry food.they do not like it much, but.......I wet it down with water or broth.......
     
  2. dreamer

    dreamer New Member

    I did "kidnap" easy child and went to lake geneva Sun nite till monday nite. It was amazingly warm and we walked the beach for hours.
     
  3. TexasTornado

    TexasTornado New Member

    Oh Dreamer-Im glad you had alone time with easy child-it sounds like it was wonderful{{HUGS}}
    Its hard but good news abt Shriners-eh? {{HUGS}}Im glad your appointment went well:)
    Keep us posted-k{{HUGS}}
    oh hey-what is this abt the recall???

    Luvs,
    Kathy
     
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