[tri-med] Tuesday Devon Update

Good Morning All :o)
Well.yesterday started out not so good :o( First of all.Devon got up at 3:30
and didn't go back to sleep :o( Probably because he slept a lot on Sunday
during the day. Anyway.I was in bed with him and needless to say I was very
sleepy still. Sometime between 6:20 when Nick left for the bus stop and 7:30
when I startled awake, the booger had taken his eye patch off :o( I freaked!
Instantly, I was convinced he'd poked or pushed on his eyeball and was
scared to death he'd permanently damaged it. I'm ashamed to say that I took
it all out on him even though it was ME I was mad at for falling back to
sleep anyway :o( I had to apologize to him a little later for my behavior
:o( So, I spent the day staring into his eye every time I could get a
look.trying to decide if I could tell if he'd hurt it. It didn't look more
irritated or anything, so I'm hoping maybe he was content just to have
gotten the blinkin' patch off??? I also had to give his bowels a jump start
of sorts yesterday as he hadn't yet used them since Friday morning :o( Was
beginning to worry us a wee bit because the boy is regular if nothing else.
We figure the anesthesia was to blame for that.same with him sleeping a lot
Sunday during the day. His bladder/kidneys didn't wake up right away either.
But they woke up the night after his surgery.

 

 

Last night I was shall we say.tape happy.when I put his patch on and took
the mitts off. I thought I had it more than adequately taped Sunday night
but apparently not. He slept better last night and when he woke up this
morning he went back to sleep for a while which allowed me to doze too. Joe
came and got us out at around 7:30 and I wasn't moving so swiftly.his bed
just isn't good for my back and neck :o( I can't really tell yet for sure if
he's seeing any better or not??? Although I have noticed a time or two this
morning when he stood back about 3 feet from the tv and did his "chief
chant/dance step" that he does when he really likes a song. The past several
months he hasn't wasted time with that.he just goes up and lays his head
down by the TV to listen. He still does that but standing back from it at
all, I hope is a good sign???

 

I called and inquired after Stumpie yesterday and Janet called me back and
said he's definitely feeling himself :o) She said to call back Thursday and
make sure the vet released him after his antibiotics are done.she doesn't
anticipate a problem :o) AND she's planning to bring him to Daytona Saturday
AM for us.so we don't have to make the long trip to the shelter where he is!
I didn't even have to ask! She said she's bringing 3 dogs Saturday who have
been adopted so their new owners can bring them home :o) She said she's
going to bring her camera for this one :o) I asked her how big Stumpie is.I
was thinking like mid twenty pound range? But I really just remember that he
fit in Devon's lap.only just :o) Well.the little tank weighs 35 pounds!!!!
YOWZA!!! She suggested that we just take him into Petsmart when we go to get
him and buy his supplies then so that we get the right sizes of everything.
I can just picture him riding through the store on Devon's lap :o) I'm
bringing my camera too :o) This will only be Devon's second time out of the
house this week counting his post op appointment in Longwood on Thursday
when I hope to get confirmation that his eye is ok (that he didn't poke it
yesterday morning). My niece's birthday party is Saturday but Devon and I
won't be going.or Joe won't be.depends on which one of us wants to stay home
with Devon and which one wants to go to Autumn's party. Nick's going :o) We
just don't think it's a good idea for him to be bumping around their house
and getting even more excited with twelve 11 year old girls twittering and
screaming and giggling. He'll be excited to go get Stumpie too.but he'll be
in his stroller during that time so we'll have more control over the
situation. 

 

I guess that should do it for today.take care and keep those prayers and
well wishes coming Devon's way.we REALLY hope that this surgery restores
most of his lost vision.and maybe even a little better since he now has a
30.0 power AcrySof  Natural lens with a blue UV light filter implanted :o)
Sure sounds impressive to me :o) I went to Alcon's site and read about this
kind of lens (IOL) and it's apparently the most widely used IOL in the world
and it sounds appropriate for Devon..but I still want to find out if 30.0
power is a lot??? I read about a case on the site where a 62 year old woman
had a cataract amongst other things and her acuity was 20/400. After she had
a -30.0 power IOL implanted and cataract removed it brought her acuity to
20/60 :o) Devon's doesn't have the negative sign in front of the number so I
assume that means it's a positive 30.0??? Of course Devon doesn't have a
complete retina and he has the cleft in his pupil but still I would think it
would mean a big improvement for 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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