[tri-med] Re: continous feeds

Hi Pam and Darrell :o)
Boy those were the days :o( Devon even had a t shirt (it was may favorite) 
that I used to put on him all the time...it said "Party!...My crib...3 AM!" 
:o) I wish I had some advice...we just took turns holding and 
rocking/bouncing him....patting him HARD on the butt always seemed to help 
him with his gas....but the gas thing happened no matter what we did or how 
we did it :o( Devon didn't get continuous feeds...only a bottle when we got 
up with him...but the gas was already trapped and causing pain from his last 
feed at bedtime...feeding him more only seemed to make him worse. We also 
think that the undetected fluid build up in his ears played a part...that's 
why sucking on a bottle helped him...it helped the pressure/pain in his 
ears...but when he stopped sucking the pain was right there waiting for him 
:o( Of course we didn't really figure this out until he had his cleft 
surgery when they also put tubes in his ears (he was 9 months old)...the 
doctor used very technical terms...he said, "there was great gobs of gunk 
trapped behind his eardrums". He was MUCH better after that surgery...not 
great...but better than he had been. He was like a new baby when he came 
home...even during his immediate recovery when the roof of his mouth looked 
like it was covered in shag carpeting (the stitches). Instead of his getting 
up like every 2 hours once put to bed...and getting up crying for couple 2-3 
hours in between...he slept for longer periods of time. Just a thought...but 
something to consider...as I said, the fluid went undetected for 9 months!
Love,
Penny...loving and devoted wife to Joe, the best husband in the world...mom 
to Nick (13 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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