Guest guest Posted November 4, 1998 Report Share Posted November 4, 1998 Caitlyn was fed via NG tube for 2 months while in heart failure. After she recovered from the heart failure we worked very hard on oral feeds. It was like pulling teeth to get her to take each ounce. At 6 months we started baby foods and it was like pulling teeth to get her to not cry during the feeds and to not use her tongue to push it out. When we started table food at 1 1/2 yrs it was horrible. She choked all the time and very often to the point of not breathing. We used the Heimlich several times a day. Because I'm such a naive parent (and she's my only one) it didn't occur to me to report this to the pediatrician (who wouldn't have believed me anyway) so I just became quick at responding and watched her like a hawk. Only at age 3 yrs is eating finally no big deal. I know we are very, very lucky compared to other CHARGErs. One advantage is that we knew she had CHARGE at 6 mos. old and in a newsletter it mentioned the difficulties CHARGErs had with oral feeds. So I worked very hard from the very beginning with the NUK brush and other oral defensive reduction techniques. There are still many foods she won't eat, but I just don't bother her with them anymore. The only advice I can give, is to work very hard with oral therapy. It seems hopeless in the beginning when you don't know how many months or years it will be before it gets easier, but if you give up, you'll never get there. Unfortunately, every child is different. My child is a success story with feedings at this point, but 2 years ago, you never would have guessed it could have turned out this well. Jeanne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 5, 1998 Report Share Posted November 5, 1998 Jeanne, Thanks for you words of encouragement regarding Caitlyn's oral feeding, I feel the way you did 2 yrs ago, but with the support of the list, we plough on each day through the gagging, choking, and spewing the food back in our faces... It'll all be worth it someday, it'll all be worth it someday, it'll all...... <Mom to Kennedy 9 mos old CHARgEr, 9, 7, and wife to Graeme> New Brunswick, Canada -- Graeme & Weir gweir@... http://www.geocities.com/SunsetStrip/Palms/5716 Quote Link to comment Share on other sites More sharing options...
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