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
|
