Guest guest Posted April 5, 2006 Report Share Posted April 5, 2006 Yuka, You mention that you fed pureed meats,vegetables and fruit and varried densities. ( is almost two and over the last year other than non-nutritive type of taste feeding by mouth (which was going ok and now is not going too well at all) he has received only Nutren, water and his meds by g-tube. I must admit although I am a little hesitant about adding something new to the mix with the reflux issues always looming in the backround I am wondering if it would be good to have him get use accepting something other than Nutren. About how old was when you started him with the pureed items and was it somthing that your Pediatrician, GI or feeding therapist suggested? Was the main idea with the pureed foods and varried densities mainly to put on weight or was there some type of feeding, digestive goal also? (mom to 23months, 5 1/2 years, wife to Pat) New York Amy & Ben > Dear Amy- > > Another thought. Our son did much better when we moved him to bolus > feeds - > and no pump at day or night. This was a tremendous amount of work for > us - > I think we started at a ridiculously small amount every 15 minutes, but > then > we took his hourly rate and spread it into third every twenty minutes, and > then in half every thirty minutes, and so on. Eventually we were up to > 6-8 > ounces every hour /ninety minutes (alternating time breaks). I later > learned to alternate densities of feeds when I started putting pureed > foods > in - one feeding of " plain " calorie dense formula, and then the next > " thick " - with vegetables, fruits and meats. Our ped wanted our son to > put > on extra weight, so he basically always had one more feeding in the day > than > he could handle - but after he reached two, she decided he was " safer " and > let us back off keeping the extra weight on (she was expecting devastating > illness at any turn - quite reasonable in hindsight). It just made sense > to > me. I would like food drippingin my stomach all night long. How well > would > I rest, and how great would I feel when I woke up? On the other hand, we > were incredibly lucky that our son tolerated the transfer to bolus so > well - > so this story is purely our own unique experience. Glean from it > intuitively whatever appeals to you ) > > So, the things that stopped the vomiting? stopping the pump. stopping > any > nighttime feeds. clear water bolus in the morning. reducing the sheer > volume of the feeds. growing. getting older. getting through teething, > getting fewer respiratory/ear illnesses. mostly sheer luck ) > best of everything- > yuka > > > > CHARGE SYNDROME LISTSERV PHOTO PAGE: > http://www.imagestation.com/album/?id=2117043995 > > Membership of this email support group does not constitute membership in > the CHARGE Syndrome Foundation; for information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter), > please contact marion@... or visit > the web site at http://www.chargesyndrome.org > > 8th International > CHARGE Syndrome Conference, July, 2007. Information will be available at > www.chargesyndrome.org or by calling 1-. > Quote Link to comment Share on other sites More sharing options...
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