[tri-med] Victor Update :o)

Good Morning All :o)
Well.as usual.never a dull moment around here :o)

Joe and I are doing ok.but pain levels have been off the charts this past
couple months :-( Meds aren't doing much if anything unfortunately.I may
have to try Lyrica soon, but I was really trying to stay away from that. The
hot tub has been my relief along with ice packs.short lived as it is. Other
than that we just keep plugging along. Joe has been slowly but surely
replacing the soffit on our house to try and help dissipate the heat and
help our power bill. He also painted Devon's closet doors so I can make it
look like one huge SpongeBob. I hope it turns out cute :o) It sure is
BRIGHT!!!

 

Nick is good.'cept for a cold right now, Joe has it too and Devon has a very
wet sounding cough but doesn't feel bad as of right now. I just hope I don't
get it :o(  Nick finished our neighbor's flower bed.well the main
one.yesterday and hopefully can finish the other side where her Azalea
hedges are this coming week. He's still tutoring Elliot on Mondays, although
they got their wires crossed last Monday and he didn't do it that time.
School has been all about reviewing for the testing out finals for IB.he
feels pretty confident but Lord I wish he'd study more :-( He's applied to 2
colleges and I'm still pestering him to apply to the University of South
Florida. I picked up his graduation announcements last week and they're
beautiful :-) I need addresses for those of you who'd like to receive one
(it will have a grad picture in it). We had a surprise visit from Laci, his
girlfriend from last year. They aren't dating but are still friends. She has
some very real problems with her dad and his wife and with her mom too.she
moved out of her dad's house rather abruptly last fall and went back to her
mom's. I knew the situation had to be really bad for her to go back there.
We didn't know how to get a hold of her as her dad and his wife moved rather
suddenly too. As it turns out he didn't even tell Laci he was moving. I
never did like that man! Anyhooooo.this past Friday I had just gotten home
after being at my CPR class all morning and picking Nick up early because
his 7th period teacher was absent when I saw a red sporty car pull up out
front. When I saw Laci running across the yard to hug Joe I was so happy!!!
I've really been worried about her and I've missed her terribly. She's doing
pretty good.although she's living between her mom's and her nana's house
presently. She's also finishing school through the Daytona State College
since she doesn't do well in the regular school setting. Her vision has
really gone south since she was Dx'd with type 1 Diabetes and she was on her
way home with her mom after getting new glasses. She recently had to have
some eye surgery because she got Cellulitis in one eye.it's still healing.
She didn't get to see Devon but we now have her phone number and we won't
lose touch again I hope :o) She is turning 18 next month and hopes to find
another place to live. She and Nick were very happy to see each other again
too :o)

As for Devon.well.he's the one really trying to keep us slightly off
balance.although Nick with his senior year transitioning is just about a
tie! We noticed some subtle changes with Devon's vision in Feb.we weren't
positive we were really seeing changes or not but every time I started to
call and move his eye appt. up, he'd do something that showed me he could
still see pretty well. So I didn't call.but then it seemed like his vision
would fluctuate??? I was reasonably sure that his retina was still attached
and intact but we also know that the silicone oil bubble is usually not
meant to stay as long as it has with Devon. So.we went for his appointment
with a sinking feeling that something was wrong again and he didn't
disappoint :o( The pressure in his left eye was 30-37.NOT good. We were
given a script for a new drop for the pressure and rescheduled to come back
in a week and a half. Of course Medicaid had to be a problem.they now need
prior authorization for some meds. The same thing just happened with his
Prevacid solutabs. They figure that anyone over 11 yrs should be able to
swallow a pill. After 2 appeals, they still denied it :o( BUTTHEADS!!! I bet
if it were their child, they'd feel differently about it! Anyway.we were
supposed to get the script filled immediately and start it that same day
while titrating down from the Prednisone drop. Good thing I had some
Combigan drops for pressure left over from his retina surgery in July.
Meantime, the doctor changed his script to a bio equivalent of the drop he
wanted and it doesn't need prior authorization. We took him back last Monday
and we knew the pressure was down because within 2 days of starting the new
drop, we noticed a definite change for the better with his vision. Sure
enough the pressure was 11-13 :-) WOOHOOOOOOO!!!! We have given him a couple
chores to do in the house, like taking his dishes to the sink after he eats
and then wiping the table off with some help. But he gets a charge out of
Joe handing him the empty close hamper from the boys' bathroom, so he can
walk it back to the bathroom and put it where it goes. It's so funny to see
him hoofin' it across the family room carrying this hamper.he giggles the
whole way! I wish the rest of us could tackle out chores with such eagerness
and good humor!

Donna and Devon and I are currently trying to obtain funds to go to the SOFT
conference in VA. I think we'll get our hotel covered but one for sure and
possibly even 2 of our sources that I was counting on that gave me $ last
year to go (we returned it when we couldn't go).no longer have the funding
:o( Still have a couple of other possibilities but we'll see how it goes.
Flights with just 1 stop are running at about 297$ presently.they have no
nonstop flights unfortunately. The really great thing is that we can leave
out of Daytona (and fly directly into Roanoke), which is alot closer and
more convenient for us and it doesn't cost more. I'm hoping to talk to Steve
Cantrell and maybe speak to one of the workshops that he does for eye
issues. He asked me last year to try and put some kind of written thing
together about all the eye related stuff we went through with Devon, and are
still going through.but writing something just seems so daunting at the
moment :o( We'll see if he still wants me to???

 

Lastly.this last class that thankfully ends next Thursday and been a real
stinker! Long story short, our teacher has never taught Pharmacology and it
became immediately apparent that he doesn't understand the subject any
better than the rest of us did. If it hadn't been for the book, which he
claims, is wrong on many counts, I wouldn't be passing the darn class! LOTS
of stuff going on there too that I won't go in to.except to say that never
before have I heard anyone talk so much without actually saying anything
worth hearing! He wastes 90% of our class time and I'm usually so frustrated
I could bust a vein or punch someone!!! Thankfully it will be over soon.bad
thing is he's supposed to be teaching our next class too.let's hope he can
teach Cardiology better than Pharmocology!

That's it for now.but take care everyone.

 

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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