finding a doctor that treated adults with cp took me
from 1994-2001. it is not easy.
--- greta von der luft <[log in to unmask]> wrote:
> Hello,
> I just did reverse area code look up, I think you
> live in MO, so this may not help you much. I have
> found two things in my area (PA). The local
> Children's Hospital (Children's Hospital of
> Philadelphia) grandfathers in adults with CP.
> Perhaps your local children's hospital does as well.
> Two there is an ortho doc here named Pizzutillo,
> Peter who sometimes grandfathers in adults as well.
> But that does not help you much if you really live
> in MO.
>
> Sorry about the school thing. Your local Education
> law center may help you with access to your college.
>
>
> Hope all goes well and Good Luck.
> Greta
> ----- Original Message -----
> From: [log in to unmask]<mailto:[log in to unmask]>
> To:
>
[log in to unmask]<mailto:[log in to unmask]>
>
> Sent: Thursday, April 28, 2005 6:43 PM
> Subject: The big update ~CJ
>
>
> Hiya,
> I'mmmmm baaaaaaaack. Aren't you thrilled?
> I've had a lot of big stuff
> going on lately thus the update. I know there
> have been a lot of emails and
> atempted phone calls from people wondering if I'd
> fallen off the face of the
> earth.
>
> Unfortunately, I've hit an unusally rough patch
> the past few months. While
> I've always been convinced that April is a black
> whole, things have been
> actually going down hill since Feb. Because of all
> the health issues I've pretty
> much failed my school semester and will have to
> repeat it. I've also had to
> stop with the volunteering and mentoring programs
> for now.
>
> I continue to sturggle greatly with headaches and
> have been in and out of
> the ER more often. Along with constant dizzy
> spells which make it hard to focus
> on anything. A few weeks ago we went to my
> allergist and found out that
> because of my severe allergies, to everything
> green or even slightly spring
> related, I am only breathing at 70% of my total
> lung compacity, which totally
> explains the constant dizzy, falling down thing.
> So we had to start meds for that
> and fight to get the meds covered because medicaid
> and medicare are really
> really bad about covering prescriptions. So,
> obviously everything is taking
> more time to get started.
>
> For those who don't remember, in Jan. 2004 I
> suffered a major knee injury on
> my college campus. I got my left leg caught trying
> to get my wheelchair
> through a non automatic door and ended up tearing
> my knee. We have been trying to
> sue the college for not following ADA law in
> regards to having enough
> accessiblle entrances. For that purpose we've
> been fighting to locate a doctor who
> would treat me. Most orthopedists wouldn't treat
> the knee injury because
> they wanted to blame it on my Cereral Palsy. As a
> result I basically lost my
> mobilty and have become 95% wheelchair bound. We
> also had to drop the lawsuit
> because we couldn't get a doctor to say that the
> tear in my knee was not a
> result of cerebral palsy. I literally called all
> over the country to find a
> doctor who sess Cerebral palsy patients as adults.
> There are sooooo few as it is
> still largely mislabled as a pediatric condition.
>
> Anyway we finally found a fantastic doctor and saw
> him a week or so ago.. He
> did confirm that my knee was torn as a result of
> the door injury. That it
> has nothing to do with my cerebral palsy and that
> my fuction tests are
> decreased to the point of almost zero function on
> my left leg. This is great news for
> going forward with the lawsuit. The bad news is, I
> now need major knee
> surgery to help keep my knee from collapsing
> whenever I stand. They will take my
> outer knee muscle, stretch it so it's pulled tight
> over the bone. Then take
> donor tissue, and wrap it around the muscle tight
> to re-inforce it and then
> screw it to my bone with 2 metal screws. It's a
> pretty big deal. They doctor
> said 3-6 months of rehab PT again everyday,
> casting, leg bracing, and pain
> management. We're not sure what the end result
> will be because the tear has healed
> incorrectly. We just have to pray that I can
> regain my mobility. Our house
> is not by any means accessible and if I became
> totally wheelchair bound there
> is no way my mom or anyone could take care of me
> here. The knee surgery is
> now scheduled for May 16th and will of course
> require a hospital stay. Knee
> surgery means no summer classes and no trip for
> my oxygen therapy in May as we
> had hoped.
>
> I also went to see a new ENT doctor because of all
> the breathing issues I've
> been having. I've basically been on antibiotics
> non stop for 2 months now.
> It turns out that they need to do a sinus
> reconstruction on me. So more
> surgery. We scheduled that for May 2nd. I'm not to
> thrilled about the date since
> that's the day we found out about my father's
> death, but I'm trying not to
> believe in bad omens.
>
> I really just need to stay positive and pray a lot
> about all of this. The
> main scary thing is that I don't handle anesthesia
> well. Everytime I have
> surgery they have trouble bringing me out. When I
> was 7 I slept for 48 hrs. At 12.
> I didn't come out for 16 hrs, and when I had my
> last surgery I coded on the
> table and was legally dead for 2 mins. Still I
> know these surgeries have to
> be done.. and soon with all the medicaid/Medicare
> cuts. It's jut going to be
> a pretty painful spring and summer. I know I'll
> be fine and get through it,
> it's just a little daunting at the moment.
>
> I'm sorry if all of this sounds like one droning,
> depressing medical report
> but this is my life right now. School,
> voluterring, work, and social things
> are all just imppossible right now with so much
> going on. As always I thank
> god for the internet. Even though it's been a yr
> or more since I've seen any of
> my friends at least we can stay in touch this way.
> As always I pray that one
> day I'll be able to travel and see everyone again
> under happier
> circumstances.
>
> This Saturday, April 30th, is my 24th birthday. If
> you pray or just hope
> it'd be great if we could all share in the hope
> that all of these medical
> procedures will lead me to a much healthier next
> year of life.
>
> Oh one more thing. Due to lack of funds I have
> disconnected my house phone.
> Feel free to call me on my cell anytime. (314)
> 550-1419
>
> I love and miss you all more then I can say and I
> pray for your good health
> always!
>
> CJ aka Christina Jo
> "Blood to blood I summon thee. Bring back the
> power of three!" ~Piper
> "Charmed Again"
>
> Believer in the only TRUE power of 3... LOVE,
> COMPASSION, STRENGTH
>
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