[tri-med] So far so good...

Hi All :-)
Well.we've had an exhausting 1st week post-op. But Devon can definitely see
light (a good sign so far). His sleep pattern has been HORRIBLE!!!!!! I'm
talking to Dr. Bell about that presently. He started opening his eye a
little bitty slit the day after surgery... and it was open a little more
every day. About the 4th day it was open pretty much all the way.and to be
brutally honest.it's very hard to look at :-( Honest to God, when someone
asks me something about him.his surgery.his eye.I keep on mistakenly
referring to his eyeball as his hamburger! It really does look like
tenderized meat :-( I told Joe, I'm not sure I can ever look at cubed steak
the same way again??? And I asked the doctor yesterday if he was sure it
would ever resemble an eyeball again. He laughs and assures us it will.it
will just take time.apparently about 6-8 weeks?? The great news is that as
of yesterday, everything one the INSIDE of his eyeball looks very good. I'm
trying to keep positive about it and I'm praying that he will regain the
vision he lost.but then I keep remembering that he was ok the first week
post-op visit for the last 2 surgeries too :-( We HAVE had a few positive
signs even though it's really early for him to be seeing anything really. As
I said.we know he's seeing light. But the really neat thing is that 2 days
ago when Joe got him out of bed, he went around the other side of his bed
and stopped a foot or 2 away from the foam rolls I slept on for the first
few nights and bent over to examine it thoroughly to try and figure out what
it was ;o) AND yesterday morning, he went to the tv stand and stopped and
bent to examine the folded cloth drool diaper that Daddy had left there the
night before.he then snatched it up and threw it off the stand because,
shame on us! It doesn't go there and that's NOT where it usually is!!! I was
afraid that we were imagining things.wishful thinking and all that :o) But
the doctor said that his retina looked really good and in tact and still
attached.bubble and buckle still firmly in place and he does not think we
were imagining things ;o) KEEP THOSE POSITIVE THOUGHTS COMING!!!!! 

 

And.I know I haven't been emailing.but for those who responded to my 1st
email after surgery, both on the lists and privately.I really appreciate
your kind thoughts and of course your prayers :o) Keepum' coming!!!! It
still never ceases to amaze me, the kindness of "strangers"! Just to share a
couple of incidents.

 

I went to do my banking today and while there updated the ladies there with
whom I've become friends :o) It's a very small town kind of feeling there
where they know a lot of their customers by name. Deanne (pronounced Deanie)
is the regional manager (mortgages/loans, etc) there and has taken a real
shine to my family and I :o) She asked me how the search for the open spiral
slide was going and I told her that Joe had looked at Lowe's but they only
had the open "wave" slide.and there hadn't been anyone back there to help
him. I asked her "Wy? Did you find someone willing to install it and build
the mounting platform and stairs for not a lot of money?". I said it kind of
tongue in cheek because she knows Devon doesn't have a lot of $ laying
around )oh.and neither do we) :o) I didn't expect an affirmative answer. She
said, "YEP! I did." I asked her who and for how much and she said, "My
husband and his crew (he's a mason) and he's doing it for free :o)". We, of
course, are buying the slide part (we've been putting $ aside for it for a
long while now). We DO need to come up with some cedar to build the platform
and a steel ladder w/rail like they had on the commercial ones.but hey.one
thing at a time. We now have someone to build it (and correctly I might
add.a definite plus) AND we have enough for the slide part :o) Rome wasn't
built in a day :o) I don't remember if I told you all or not.but when I
looked into buying a commercial grade/size one, I just about had a stroke
when I got a "discounted" price on it from the people from whom the county
buys their playground equipment. A slide/w JUST a ladder/rail was just shy
of 4 THOUSAND $!!! Oh and did I mention that it has to be installed to
specific specs on a specific sized patch of ground with a specific amount of
sand for the landing zone, etc.the company that wells the slides could
install it for a mere 4THOUSAND $. Ok.it's not that Devon is not worth 8
THOUSAND $....but GEEZ!!!!! Try as I might I can't quite justify a second
mortgage for a slide.even for Devon. SOOOO.this was wonderful news!!!!

 

And for the next really cool thing.

Do any of you remember the young woman from Alcon I told you all about after
Devon's 1st surgery? Her name is Charity :o) 

Well.I again called Alcon after contacting two medical supply companies AND
doctors, my pharmacist (after looking on ebay first with no luck) for the
clear plastic eye shields (this was about 2 days before Devon's surgery).
After speaking to a gal at the specialist's office, she pointed me to Alcon
thinking the plastic eye shields they had previously in their surgical kits
were from Alcon. Well.I got yet another very nice young woman named Nicole
:o) Alcon must be packed with them.or else I just got very "lucky" :o) She
told me that unfortunately those eye shields did not come from them.they
came from the medical supply companies I'd found and they just put them in
their kits and no longer had any :o( BUT.while she had me on the phone she
looked online and found another source and then just for kicks she looked on
ebay! Well.there was one seller who had a lot of 60 for 9.99 and 13
something for shipping. The only problems were #1 there was no buy it now
option and #2 the auction didn't end for almost 3 days. BUT.I thanked Nicole
for her kindness and her help and got off the phone and emailed the seller
and asked her if there was any way she could add a buy it now option and a
2nd day air option if it was even allowed for her to??? I briefly explained
the situation and told her I really only needed like 5-10 of them but would
happily buy the whole lot and extra shipping to get them. Imagine my
surprise when she emailed me the next afternoon and told me that she had a
few around the house and would be happy to mail them to me. I couldn't
believe it!!!! I offered to buy them and to pay for shipping but she refused
:o) I received them the other day and they are PERFECT!!!! I also got an
email from Nicole telling me that she and Charity have been friends since
1st grade and were talking and Charity happened to over hear our
conversation and she told Nicole that she knew who she was talking about and
she sent Nicole my pre-surgery Devon update :o) She wrote that she knew
Devon's surgery was that day and was thinking of Devon and our family,
wishing the best outcome for him :o) I ask you all.is that not VERY COOL????
All these wonderful people come into our lives just as we need them.they're
like angels!  And you can believe that I'm going to keep in touch with them
if they're game :o) 

 

 

Anyway.now that I've probably embarrassed Nicole and Charity.I guess my
update is complete (just kidding you 2.you're wonderful and I just wanted
everyone else to know it too!!!

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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