[tri-med] Victor Family Update 3-31-08

Hi Everyone :o)
Yes.it's been a while.so.yes it'll be a long one :o) I'd advise you to
delete now if you're not in the mood to read. I should also forewarn
you.there will be some intensely personal physical stuff about Devon. I
thought about editing a version for those that might be have their delicate
sensitivities offended but ya know what?? I just don't have the energy.so
you all get the one and only version and my apologies to those I offend :o)

 

Where to begin.

 

OK.well let's start with Joe and I. Joe hasn't been doing so well ever since
he ripped that carpeting up in our living room.but he's been slowly coming
back out of it tackling one chore/job at a time :o) As for me.the new meds
combo my doctor started me on has ceased to make a dent in the pain.kinda
bummed me out because it was taking the edge off at least a little the first
couple weeks. My blood pressure was even normal for a change. So.I've
decided to try and tackle it from another angle with the yoga that Nick's
mentor Sandy encouraged me to try (I've been to 3 classes now).AND thanks to
Sandy and the membership director at the YMCA, we got a scholarship so that
we can actually afford a family membership now :o) Last Friday evening was
my orientation where I was shown "the circuit" of machines and shown how to
work them. He started me out slow/beginner.thank heavens! I felt like I got
hit by a truck the next day but survived.so I went back today to punish
myself some more :o) Felt good though.what does that say about me I
wonder??? Sado-masochistic tendencies maybe??? Anyway.I'm starting to lose
weight again and it makes sense to get in better shape.for myself.for Joe
and for the boys :o) I just hope it helps with the Fibromyalgia.we'll see???
I'm hoping Nick will want to use the facilities too.I KNOW Devon will freak
out that he gets to go swimming a lot more now!!!!

 

Nick has been doing pretty good all in all :o) AND he tested out of Spanish
4 last Wednesday with a 5 (he needed a 3). What that means is that he'll
finish out the year in Spanish 4 and then he's done with language and if he
tests out of all his other classes AND passes them all.he can get his IB
diploma. If he had not passed with at least a 3, he would not have been
eligible for his IB diploma.no second chances :o( So.that was a huge
relief.now we just have to hold our breath for report cards and see if he's
maintaining the status quo. A bigger effort has been made so I hope it paid
off so that he'll see it for himself. Also.what's considered a good SAT
score??? Anyone know??? He finished the service part of his 150 CAS hours
(community service/50 hours of 3 different types of service). He has just
about finished the sweat/action hours at Journey's End where he's been
actually enjoying working with and for the abused and neglected animals
there. He's hopefully going to continue working there a day a week even
after he doesn't have to volunteer anymore. So, he'll only have to tackle
the creative hours next. We're proud of him :o) He's helping his dad care
for Devon this week.which I really wish didn't have to be.but it's necessary
and we try to trade out game time when he earns it.

 

Now.for Devon. Here's where parts of it get personal and little graphic (not
sure that's the right word). His vision has further deteriorated and the
drops we were using to dilate his pupil to let more light in around the
cataract in his left eye, is no longer effective. We took him back for his 3
month follow up last Thursday. We knew in our heart of hearts that it was
time for surgery.and Dr Blumenfeld confirmed our feelings. Even when we
already dilated his left pupil, they added another type of drop to try for a
better look and even with that and Devon's good behavior and cooperation for
the exam (thanks in part to iPod Shuffle), it was hazy even still. So.Dr.
Blumenfeld wants his partner to do the surgery because he is the best
cataract surgeon in the area. Dr. Blumenfeld will be in attendance as well
to do a thorough exam while Devon is under. Besides the usual.the anesthesia
doctor and the surgical nurse.there will be a surgical rep from Alcon there.
Because it's impossible for them to find out what size and strength the
replacement lens needs to be until he's under, the Alcon rep will be on hand
with a wide variety of sizes and strength lenses so that they'll hopefully
have the right one for Devon available. Obviously, it will take a little
time to coordinate.but the scheduler said he will hopefully have a date for
us some time this week. Yep.I'm already sick to my stomach with nerves :o(
On the brighter side, we met a really sweet little girl named Liliana and
her

also very sweet momma. They live in Melbourne FL and Lili has a 22q13
chromosome thing. Lili was every bit as busy as Devon is and they seemed
rather sweet on each other, both being very gentle with the other :o) 

 

Well.here's where the more personal physical stuff comes in. Our little boy
is growing up.and I wasn't ready for it :o( First of all.Devon's penis has
been retracted since birth.meaning it was all there.just buried deep within
the little suprapubic fat pad down there. We've been noticing the last few
months that "Petey" has been visible MUCH more.like most of the time :o)
This is actually something I was quite happy about because he actually
looks.dare I say.more normal down there. Shouldn't matter I know.but it's a
nice little piece of normalcy :o) And then IT happened! Last week, I was
giving Devon a bath and he has learned how to get out on his own holding on
to the side of the tub. I hold his arm just because it makes me feel better.
Well.he started to slip and rather than hurt myself and him I let him lower
himself to the floor just guiding him, so that he sat on the floor. He
didn't get hurt and was helping him get up and dry him off and I noticed he
had some fuzzies on and near "Petey" from the floor. So I started to dry him
off and clean off the fuzzies and low and behold.the fuzzies are attached!!!
AHHHHHHGGGGGGGGGGGG!!!!!!! My baby has pubic hair :o( I wasn't ready for
that!!! Yeah, I know he's almost 13 but I just didn't see it coming :o(
FREAKED me out! All I could do was continue to try and wipe it away.it
didn't work.and say "OH  MY GOD!...How could he be such a big boy???". Devon
thought I'd lost my mind and just giggled at me and looked at me like I had
3 heads. Nick, too, thought I'd lost my mind and Joe just shook his head and
said I should be happy. Which I am.sort of. It just shocked me for some
reason.maybe because I thought he'd never grow old enough to reach puberty
and he has :o)???? So.of course I had to call my mom and say, "you'll never
guess" She said "what?". And I said, "YOUR GRANDSON HAS PUBIC HAIR!!!!!".
She was just as shocked as I was :o) She relayed it to Donna and Donna said
"that's nice".apparently joining Joe and Nick's "what's the big deal?" club
:o)

 

So.there you have it folks.I warned you :o)

 

Love,

Penny...loving & devoted wife to Joe, the best husband in the world...mom to
Nick (17 yrs old...lover of Fishing, Dragons, Turtles, WofWC,
RollerCoasters, Chocolate Icecream w/ Ovaltine sprinkles, Devon (12
yrs...lover of Barney, 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 10? year old yellow lab adopted from FL Lab Rescue
12/13/02 :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

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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