[tri-med] Victor Update...P.S.

OH! Forgot to give you all a sleep update on Devon.
 

Well.it looked like he was back to good hours again.but it's now evened out
it seems and although he back to falling asleep at his usual time (early
evening).he's getting up between 1:30 and 3 AM :o( I emailed his
pediatrician today and asked her about raising the dosage on his Trazodone
since he's been on the 50 mg dose since he was 7 yrs old. He HAS grown a
whole bunch since then so reason.or maybe desperation tells me that if his
dosage were increased to match his growth that maybe it would again work???
We'll see what she says.

 

And in Devon's vision update, I didn't mention that the reason we knew his
vision was further deteriorating was because he's been smackin' into walls
and doors again and he mostly uses his hands out to navigate the house.
Please say prayers that this surgery allows him to at least see as well as
he did before the cataract started changing and that we can successfully
keep his hands out of his eye after surgery so that it will heal without him
doing permanent damage. A lot to ask I know.but it breaks my heart when he
can't find me or when he runs into things :o( About all he's seeing
presently are colors and vague shapes.enough for him to identify characters
on his favorite shows at least.

 

BUT.let me end on a positive note.

 

This weekend we were playing the "Devon takes my hand and makes me point to
the characters on the TV screen in the movie he's watching and say their
names" game. We love this game and Devon LOVES it when I say the names. But
when he had me pointing to Blue (Blue's Clues).I was really trying to coax
him to SAY "Blue".and at first he tried it ended up a raspberry/motorboat
kind of sound that started with the "B" sound.but he made like 3 other
attempts/approximations for "Blue"!!! He did.I swear it! I just don't get
why I can't get him to repeat things consistently? He has made other
intonations/word approximations.for other people even. But sometimes I think
I imagine the whole thing? And then he renews my hope again.

I'll NEVER give up on him.

 

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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