Guest guest Posted February 9, 2006 Report Share Posted February 9, 2006 Thanks Sharon. Yes.... became so much happier...like . We have to sometimes work hard to separate in our minds what is " normal " for us vs what is " normal " for kids with these issues....the most important thing to me is what you said...the happiness of the child. Dan's portable pump travels with us everywhere too.. as a family....it has made life easier for my other children as well...they have more of my time too..and as they are getting older...they can help too. Amazing how all of the people in our life, and the friends of my children, and our neighbors etc. dont even blink when they see the feeding tube. They all seem to see this sparkling little boy who flirts and giggles and just engages everyone he meets. Plus...I believe that kids like and teach the world a lesson about acceptance and understanding of being different. I will do whatever it takes medically to provide him a life of comfort, of good health, and of the best quality time I can. I also have a husband, two other children, my own business, and a home to integrate within a complicated array of issues. This very morning, February 9th...Thursday, he was going up the lift on his special bus that takes him to school...he looked at me with this huge ear to ear smile. He looked good, his cheeks looked full...he was bright and he was soo happy. I must be doing something right, huh? lol. I wish and could meet eachother!! Have a great day. Sharon wrote: , Your 's situation sounds exactly like 's. Ditto to all the information you provided about the feeding tube. We fought the tube for 4 long years. Now, It is the Best thing we have ever done. In California, it even opens up Nursing Services for the family. now has another 3 hours per day to play,sleep-in or do whatever instead of trying to eat. He is sooo much happier. Hindsight...... The medications are easy to administer. He can eat on the run with the pump backpack. No one knows he is eating. Now we no longer have to plan our day around trying to get those 3 meals into . Best wishes to all who have to make the decision. Sharon T. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 13, 2007 Report Share Posted February 13, 2007 You know your child best and if in your heart you feel that that is the best decision for him go for it. Mason was on a feeding tube when he was younger but now he eats about the same as you described with your son. He's a 25 lb 2 year old who likes to eat but throws up a lot so I also was thinking he may have to be on a feeding tube. As fa r as getting his meds in I usually mix Masons with some baby cereal, you could try that if you haven't already and if that doesn't work a feeding tube may be the best option. I hope every works out, let us know what you decide to do. Chrissy Mason's mom > > We are finally considering a feeding tube for who is almost 6 > years old. He has always been able to eat from a bottle, and we > found feeder bottles with a certain nipple to be the only way for him > to get any substance. We've had two swallow studies and he needs > honey consistency purees and liquids. He has approx. 12-15 oz of > baby oatmeal with 4 oz milk for breakfast. An 8 oz bottle of milk, > pediasure or carnation instant breakfast for lunch and whatever the > preschool teachers can feed him. Then he has approx. 9 oz of baby > foods for dinner. His topamax sprinkles have to be added to the > food, and it has to be warmed, and he has to be held tightly like an > infant and will only eat for familiar faces. Normally, he eats well > for my husband and I but if he's ill or has sores or a loose tooth, > he refuses. This is upsetting because we worry that he won't have > enough medicine to control his seizures. He has a strong sucking > ability with the bottle, but when it comes to spoon feeding, it's > been really hard even though we keep trying. Doctors' aren't too > concerned about his weight (32 lb) and I guess the only reason we are > really considering it is for medications. If he gets it through > another source, I think we can focus more on spoon feeding without > worrying that he won't get the meds. Any thoughts? We hate to feel > like we're taking a step back. > > Renae and > Parents of 3 in Ohio > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2007 Report Share Posted February 18, 2007 We live in Gratiot (about 45 min east of Columbus, near Zanesville). I know exactly where Circleville is - Pumpkin Festival. I'm so glad your daughter is gaining weight now. Is it correct that only milk, water or formula are used in the feeding tube? I'm also worried about how easy it is to pull out? would never pull it out because he doesn't have the dexterity or strength to do so, but in our moving him around, I'm afraid it could get pulled out. Where do you live now? > > > > We are finally considering a feeding tube for who is almost 6 > > years old. He has always been able to eat from a bottle, and we > > found feeder bottles with a certain nipple to be the only way for him > > to get any substance. We've had two swallow studies and he needs > > honey consistency purees and liquids. He has approx. 12-15 oz of > > baby oatmeal with 4 oz milk for breakfast. An 8 oz bottle of milk, > > pediasure or carnation instant breakfast for lunch and whatever the > > preschool teachers can feed him. Then he has approx. 9 oz of baby > > foods for dinner. His topamax sprinkles have to be added to the > > food, and it has to be warmed, and he has to be held tightly like an > > infant and will only eat for familiar faces. Normally, he eats well > > for my husband and I but if he's ill or has sores or a loose tooth, > > he refuses. This is upsetting because we worry that he won't have > > enough medicine to control his seizures. He has a strong sucking > > ability with the bottle, but when it comes to spoon feeding, it's > > been really hard even though we keep trying. Doctors' aren't too > > concerned about his weight (32 lb) and I guess the only reason we are > > really considering it is for medications. If he gets it through > > another source, I think we can focus more on spoon feeding without > > worrying that he won't get the meds. Any thoughts? We hate to feel > > like we're taking a step back. > > > > Renae and > > Parents of 3 in Ohio > > > > > > > > > --------------------------------- > Access over 1 million songs - Yahoo! Music Unlimited. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2007 Report Share Posted May 28, 2007 Hi All, Sorry for the cross-post. There is something odd about 's extension hose for his feeding tube and the stopper on his Mic-Key button. They are both pinkish. Almost like Pediasure. Nothing new has been given. Any ideas? Sharon T. Quote Link to comment Share on other sites More sharing options...
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