[tri-med] Victor Update

Hi Everyone.
I'll bet you all thought I fell off the face of the earth?! No.just more
than the usual chaos around here lately. Not sure I even know where to
begin?

 

I'll start with Nick I suppose. He has now officially graduated! YAHOO!
FINALLY! We went with him yesterday to the TSIC luncheon where he received
his prepaid college scholarship with the other 12 seniors in our county who
applied and stuck with the program :o) They each gave some advice to the
incoming Freshmen and when Pam gave them each their little gift bags.each
student's mentor had written a little something about their charge as a
picture of that student flashed onto the screen, she read it. Nick was "Most
Humble" and it said the following: "Nick tries to hide his intelligence, but
he just can't. With an IB Diploma, and Engineering as his interest, he will
have no choice but to succeed and let people know how bright he really is.
Especially at Embry Riddle or UCF.or wherever he decides to go. Get ready
for fame and fortune Nick!". He wants to take some time off and we really
don't have a problem with that. He's worked hard and I really don't blame
him. Although I suggested to him that he go to the Daytona State campus
right near us in Lake Helen and perhaps take any core classes that he
doesn't already have college credits for. He's talking like that sounds
pretty good to him. In the meantime, he's working for our neighbor across
the street and my brother has been working him as well although I really
don't think it's a good idea to work for family. It's like loaning money.it
can backfire on ya :o)

 

Devon has been doing pretty good too :o) He was even sleeping better.but
it's up and down right now. Some really great news is that he's off his
Reglan and no more Miralax either. So far so good. No vomiting in a couple
months now at least :o) I think he's finally healed from his bowel
surgery.it's been almost a year. He's still on a low fat diet to help ward
off anymore Pancreatitis. Hwever.he's just shy of 5' tall and weighs a good
94-95 lbs. We're so looking forward to high school for him next year.I never
thought I'd feel that way.but I think he will be challenged and I think
he'll love it :o) It doesn't look like he'll be going to summer rec this
summer. I've been in contact with Disability Solutions and if the county
does not comply, Disability Solutions will file a complaint and I, along
with anyone else who wants to, will sign it. They have someone new in charge
of the program this year and it's blatantly obvious they have neither the
clue nor do they care about kids with special needs. Keeping in mind that
Devon has gone every year since the program's inception.he no longer fits
the criteria. As of this year the child has to eat orally with little
supervision, they must be walking (no wheelchairs or guidance), they must
not be "runners", and they must be able to use a bathroom independently.
HECK! If he could do all that, he'd be in typical kid summer
rec!!!!!!!!!!!!!!!!!!!!!!!!!!! Joe and I were HOT!!!!!!!!!!!!!!!!!!!!! I
have to get a letter of rejection.Joe will be talking to the supervisor
tomorrow. Anyway.he has one more week of school and then he'll be bachin' it
with Joe and Nick all summer :o) He has a new behavioral therapist named
Dante. He's very good and we really like him. He even went with us to Nick's
graduation and he comes one day during the week and one day on the
weekend.he even goes out into the community with us. He's given us some good
pointers on handling some behaviors. Devon really only has a problem with
"socially inappropriate behaviors".not really much aggression  and no
violence. 

 

Joe and I are doing ok. I'm on different medication for the Fibromyalgia and
it seems to be a bit better.still tweaking though. I'm on Elavil and
Tizanadine as well as Mobic (Meloxicam).and I'm trying being off my blood
pressure medication. I've been having less muscle pain about half the time
these days which is nice :-) I just finished my last class last Thursday.
I'll get to walk in my own graduation ceremony on 7-10-09 (it's Friday.I
think that's the right date?). I just got my black cap and gown and I get to
walk with honors cords :o) I also got my requested externship site where
I'll be training for the next couple of months (300 hours-no money). Some
time in the next 2 months I'll be taking my certification test and then when
my externship is over, I'll officially be employable as a Medical Assistance
Technician :o) Yeah!!!!!! A paycheck again! I've posted my resume online
with Employ Florida and I'm going through some steps so that One Stop
Employment will pay for my testing fee of 90$ and money for shoes and
scrubs. Not sure what kind of office I want to work in yet??? I'm externing
at a Family Practice and I'll get to do and see a little bit of everything.
I wouldn't mind learning Billing and coding too. Joe has been doing projects
around the house. It's a vicious cycle though. For example, he pressure
washed our driveway over about a 2 week period having to stop and start to
recover from it. He's also painted a small section of our front room with
Kilz (supposed to keep mold and mildew at bay). It's all a work in progress
and he can only do a little bit at a time.but it's all getting done and he's
in pretty good spirits most days except the really bad ones. I have my own
little painting project in the works. I already painted a "waving Elmo" and
Joe has base coated the closet doors bright yellow and white. I'm making his
closet doors into one huge Sponge Bob Square pants. It has a mostly finished
face now.but since I'll be starting work I don't imagine I'll get much done
in the coming months.we'll see?

 

I guess that covers most stuff? I'll try to keep in touch with everyone.and
I'll be at the SOFT conference.we got most of the funding needed.only about
150-175$ short. So I'm not too worried about it.I booked our flights and
hotel already.

 

Love,

Penny...loving & devoted wife to Joe, the best husband in the world...mom to
Nick (18 yrs old...lover of Fishing, Dragons, Turtles, WofWC,
RollerCoasters, Chocolate Icecream w/ Ovaltine sprinkles, Devon (13
yrs...lover of ROCK-n-ROLL, Blue, Nappy ol' Bear w/dreadlocks, Elmo, & food
in general. Full trisomy 13 w/balanced translocation 5 and 13), and Trooper
the Wonder Dog...our 12? year old yellow lab & Smoochie, our SILLY acting &
GOOFY looking 1 yr old Basset/Dachshound/Jack Russell mix :o)

Please visit the webpage my wonderful friend Karen made for me on our
trisomy listserv at:

http://www.trisomyonline.org/victor.html      

AND...visit Noah's Never Ending Rainbow at:
<http://www.noahsneverendingrainbow.org/> www.noahsneverendingrainbow.org
AND..

 <http://livingwithtrisomy13.org/album9.htm>
http://livingwithtrisomy13.org/album9.htm 

AND http://web.coehs.siu.edu/Grants/TRIS/

AND my new slideshow at: 

http://www.onetruemedia.com/shared?p=3e291611cb644c422ff6bb
<http://www.onetruemedia.com/shared?p=3e291611cb644c422ff6bb&skin_id=402&utm
_source=otm&utm_medium=text_url>
&skin_id=402&utm_source=otm&utm_medium=text_url

"Faith sees the invisible, believes the incredible & receives the
impossible"

 



                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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