[tri-med] Re: continous feeds

----- Original Message ----- 
From: "pam&darrell" <bifman@xxxxxxxxxxxx>
Subject: [tri-med] Re: continous feeds


> penny said the same thing about devon-makes me wonder.  were there no 
> signs
> of infection at all?  was it only apparent at night or did he cry all the
> time or just at night?  we are getting desperate here.  thankfully we are
> starting to get shift nurses a couple of nights a week.  thanks for the
> help.
>
> pam, darrell,tyler t13m, kira 2.5
> elora ontario

Hi Pam :o)
Let me be more clear...Devon did not have infected ears...but the fluid that 
normally drains inward...was trapped instead of being able to flow. That 
causes incredible pain...it can cause the ear drums to burst...as mine did 
when I was a child. I remember one time I was about 6 and my brother and 
sister were fighting loudly...I remember putting my hands over my ears and 
SCREAMING at them to shut up...very uncharactoristic of me at the time. When 
I layed down and was quiet it seemed to get worse....maybe because I wasn't 
doing anything and focused more on the pain??? That's why, when we found out 
that there was "great gobs of gunk" trapped in there, his crying made alot 
more sense to me. We're thinking very seriously now...because Devon has 
grown so much and his ears, just this year, are now draining inward instead 
of down his neck....that maybe it's time to get his eardrums patched and 
maybe eliminate alot of the infections he gets because of the big 
perforations in his eardrums (the perforations were caused by the tubes by 
the way). BUT...his infections have been much fewer these days...maybe 
because he's growing out of them???
Love,
Penny...loving and devoted wife to Joe, the best husband in the world...mom 
to Nick (14 yrs old...lover of Dragons, Turtles, Yu Gi Oh, RollerCoasters, 
Chocolate Icecream with Ovaltine sprinkles, Devon (9 yrs...lover of Barney, 
Blue, Bear in the Big Blue House, Elmo, Stuart Little, Teletubbies and food 
in general...Full trisomy 13 w/balanced translocation 5 and 13) , and 
Trooper the Wonder Dog...our 6 or 7 year old male 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.htm
AND...Devon's moment of glory in Exceptional Parent Magazine...
http://www.eparent.com/familiarfaces/ffaces_4_01.htm
AND...see our 3 handsome boys on FL Lab Rescue's website at:
http://www.labradorrescue.net/success/index.html 


                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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