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Posted by Dana on August 04, 2003 at 10:22:10:
In Reply to: wow-- I am pleasured to meet you-- you seem very courageous! posted by Dana on August 03, 2003 at 23:09:29:
Hi Dana, You sound like you have been through your trials and tribulations as well with your kids. Thank you for your kind words but really, I dont know about how courageous I am. Some days I wonder whether I am doing the right things, I feel bad about feeling like I am going to lose my temper with my daugher and yell at her (even though I know she doesn't understand), the feeding issues have been so frustrating - between trying to teach both kids how to eat, and the constant vomiting from my son - there were several times I just wanted to give up. But, then when I felt myself going on overload, I would try and take a few steps back and put things in perspective, try not to worry so much, and just say, ok, enough of what these dr.s and therapists are saying, we just need to have a day or two where we are just 'a mom and her kids', you know, enjoy them for their infancy and toddlerhood and spend a day or two out of the week where we did not concentrate on what was wrong, and concentrated on what was right albeit easier said than done. Like you, I have also made a couple of friends on line that I "talk" with and I would love to talk more with you. I have lots of things on feeding I could share. I wanted to ask where you are from? Take care... : Personally, I feel more comfortable recently about things with my kids than I have felt in a long time. Before birth, we discovered the problems with Dawson's urinary tract. The high risk OB docs asked if I wanted to abort because he had a 60% chance of death after birth. We went on with everything and am very thankful- Dawson is a really great and funny kid! But, we have gone down a very very long road. I'm not going to say much more because of brevity sake, but I feel thankful that we are were we are today-- mostly because of the g-tube. : Did your son have a Bard placed? I hated that button. It leaked profusely and he got two nasty staph infections- plus granulation. But I switched him to an AMT mini tube last April and I can't say enough of it. It doesn't leak, he hasn't had any other infections, and no granulation for a year. The button is a cinch to replace. : CONGRATS on your huge and profound insight on your son's condition. Can you pinpoint anything that might have led to his weight gain? How did he learn how to chew (that's Daniel's issue)? : I do feel like my parenting skills are very good---until I have to deal with feedings and vomiting episodes. There- I lack the patience, insight, and general good-nature. Feeding and teaching the boys to eat is definitely where I fall short. I feel very angry about myself and kids when discussing this. And, that's where I feel awful. : Daniel has gained weight well over the last year. But the only reason he's gaining is that I am feeding him only smooth foods. I feed him baby food oatmeal mixed with 3 scoops powder enfamil and 3 oz half and half. I do that at least twice a day-- three times if he vomits a meal. I feed him one to two jars of baby food (stage 2 and some stage 3) a day. The rest of the time he drinks only half and half (40 cal an oz). He gets 2 oz water at bedtime after I brush his teeth. : His brother will eat solid foods, but eats then VERY slowly. It takes him a long time to eat a couple bites- he cheeks the food and chews MANY times before swallowing. This has gotten a lot better over the last 2 years. Dawson is actually enjoying 75% of his meals now. I rarely fight with him over this anymore-- and he only vomits with a meal about once every three to four weeks. That in itself is a miracle. But, without his nightly can of pediasure through the tube, he won't gain weight. We've tried weaning him off the night feedings for a year but without success. : I need courage now (or in the near future) to start trying to teach Daniel how to chew. He doesn't have lack of muscle tone-- and he seems like he knows how to move the food around in his mouth. He seems to loose the food in his mouth and gag- then vomit or just spit it out. I tried getting our feeding/growth clinic to help- but I got frustrated over their advice over this and Dawson's eating. They suggest that I give him a bite every 30 sec for 15 minutes-- smooth food only when the food hasn't been swallowed. I am also supposed to use a rubber tipped spoon to retrieve the cheeked food. That elevates my stress and doesn't seem to do the boys any good. Therefore, I told the clinic everything was going much better (that was only a half lie) and we were discharged from the clinic's clientele. : But, I realize that soon I will have to teach Daniel to eat. I am looking for any advice and encouragement you might be able to offer. : Thank you VERY much and many blessings to you and your family! I feel very honored to talk with you. : Dana : PS- Both boys have come up negative for reflux and their swallow studies show nothing physically wrong.
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: I am sooooo humbled to hear other's speak about their lives. I commend you for your last words, about wanting another some day. Personally, I can't imagine doing this again. I don't feel I have the strength and patience for the kids that I already have. That's the real reason that I come here. It takes a lot of courage for me to plod on with things. I feel a bond with the people I have met on this board and a couple others. I need the connection of those who are and might be going through the same thing we are. So, thank you for coming here and sharing yourself with all of us.