[tri-med] Sunday Morning Devon update

Good Morning All :o)
I'm pleased to say that after a really rough first night.we all slept MUCH
better last night! I decided I wanted to be the one to sleep with Devon
again because I wanted to be able to hear him breathing. Sounds goofy.but as
many of you know Devon takes Trazodone at night. His dosage was just upped
to 100mg but it was too soon to see a difference. So.before his surgery and
with none of his medical professionals willing to go out on a limb and
prescribe some kind of sedation at night so he would sleep with the patch
on.we had to improvise.it was either that or club him :o) So we asked our
pharmacist if we could give him Benedryl with the Trazodone hoping that it
would increase the sleepy effect. I really didn't hold much hope because
it's never had that effect on him before.but still I wanted to believe that
together with the Trazodone it would act as a sedative without hurting him.
We didn't want to give it to him his first night because of all the drugs
and anesthesia  given to him the day of surgery. 

I sleep walked Devon to his bed at about 9:45 and crawled in with him and
zipped us in. He didn't stir when I settled in next to him.a good sign ;o)
We also wanted to see if we could tape the patch on well enough so that he
couldn't pull it off easily, and NOT put his mitts on. He was very aware of
them the first night and spent the entire night messing around with them
among other activities :o(  SUCCESS!!!! He only reached up and tentatively
touched the patch a few times this morning. I'm not sure what time it was he
woke for the first time but it felt like maybe around 5ish.maybe even
6ish?...it was still dark. Definitely past 1 to 3 AM! He even laid back down
next to me a few more times and went back to sleep :o) The last time he woke
up we laid there and played quietly for about an hour or so and then I went
and let us out of his bed. We NEVER get to sleep to 8 o'clock!!!! His eye
was really bloodshot this morning probably because I'm not putting his night
time lube gel in his eyes to keep the cornea from drying out because he
doesn't close his eyes all the way. But they're not so angry looking this
morning :o)

He also seems to have resigned himself to the fact that to get the patch
off, he has to wear his mitts and vice versa. We patch him at mealtime too
so that he can feed himself. He even offered me his hand this morning and
helped me (by not fighting me) put him mitts on. Getting the patch on is not
as easy.he even argues with me when he's asleep but as soon as I stop taping
he settles down again and quits fussing. I still don't trust him not to try
and pull off the patch at night but really, he's been such a good boy! We're
so proud of him! I'm sure it will still be an interesting week but I'm not
dreading it near as much as I was :o) Isn't it funny how he always seems to
step up to the plate at the most critical times :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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