Guest guest Posted March 5, 2000 Report Share Posted March 5, 2000 , Thanks for including us in your message. Things here are calming down - finally! I am so glad you are participating in this list. It is great to have another parent of an older child to bounce things off of. Jodi Hello again Hello all. I'm catching up after a few days absence (seems like the story of my life!). Jodi, I'm so sorry to learn of the difficulties Max is having since the surgery. Your story about the gastro's feedback gave me pause. You're a great role model for us all..........when it doesn't feel right , keep asking questions. I hope Max has a more comfortable weekend and that you can get some rest. Regards to and Jenna. Dennise, (hi!, I'm with 1 n) I'd like to echo the group's gratitude and regard for your efforts with this listserve. It's an extraordinary undertaking, and you approach it with all the care and respect and thoughtfulness we could ever hope for. I support your decision to limit it to adults. We express an adult point of view here and the experience of sharing would be appreciably diminished if we had to censor ourselves. An RSS children's listserve is an interesting idea, but one that would require a great deal of time and energy in supervision and oversight; in short a huge responsibility. So Dennise, thank you for all you do! , You and Josh are in our thoughts and prayers. Families are something, aren't they? It sounds like you're going to get the support you need from those who are there to give it. It's dissapointing when we realize our families are limited, but it's about them, not you. Hang in there. , you're at the beginning of quite a journey. All parenthood is a journey, but parenting a child like ours with special needs is a special road, and everything seems to have more intensity; the pleasure, the pain, the joy and the concern. You sound very loving, so you have what you need to get you through. Just a thought, all of our children need the special attention of a pediatric endocrinologist with experience in RSS. It's an important place to start. Best of luck, and keep in touch. I was thinking about the question of how to deal with the questions about how the children look. I think there are at least two issues. How to respond, and how does the question make you feel? I think the last question comes first, of course. I think that other people's sometimes insensitive and ignorant responses to our children are challenging to handle. However, I think these situations put us on the spot to deal with some of the difficult feelings we may not have entirely dealt with about our kids having these problems. If we're really accepting that our child is OK, even with RSS, we won't need to get defensive. I also don't necessarily think an explanation is always necessary. "That's just the way he/she is." is an acceptable answer for a stranger. The choice to share more about oneself or our children can be made based on the relationship and the situation, not feeling defensive or put on the spot. Regards to all, Enter Ht: ft. in. Enter Wt: lbs. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2000 Report Share Posted March 22, 2000 I should have saved my email I sent several weeks ago. We had several visits with a nutritionist about the issue of how to add calories easily. Besides the easy things that pop to one's head... (cheese, yogurt, etc). Canola oil added to food (not vegetable oil, canola is pretty tasteless). Other small things that have lots of calories. * Yoplait " Trix " yogurt. It is a small container but has something like 120 calories! * Meyer bologna. (one piece has, shoot, I think 90 calories). * Taco Bell refried beans or side of rice. * Don't laugh - Girl Scout Thin Mint cookies (one tiny cookie is 35 calories!!!) * Clif Bar (this is like a Power Bar, better tasting, and has 250 calories in one small bar. Even if they only eat 1/3 bar, it's a lot. You can find them at Trader Joe's, or the nutrition/sport area of a grocery store) * Standard granola bars (120 calories in bar). * The hot dogs with the most calories, I believe, are the Meyer weiners. Hope this helps. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2000 Report Share Posted March 22, 2000 Hello everyone. Wow the group has grown so much in the short time that I have been away from it. Storm is 4 1/2. He weighs 23lbs. and is 36 " tall. He's getting taller but still not gaining much. I had a question! I found out that his Ped Endo, is not board certified in Endo. Should I be concerned about this. I can't believe the last time we were there she just said he's getting taller that's good. Yet he has hardly gained any weight at all. Any opinions. We are getting a new insurance company and I don't think she is covered anyway, but her partner is. I'm not sure what to do. Hope everyone is well. Great news on Max!!! Carmen Snyder Mom to Storm RSS 4 1/2. and Paisley 7. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2000 Report Share Posted March 22, 2000 Hi Carmen, Judy, and any one else.... Jes has a very hard time with volume, she is now on 1part Suplena to 4parts pediasure. Suplena has TWICE the calories of pediasure, but also alot of protien, I think it's an adult formula. That's why it is diluted w/ pediasure. She can't tolerate it at night, (she can't tolerate much at night) - it seems a little thicker (not much), but figure it would take longer to digest, being so dense. She does fine during the day with it and she seems stronger the past couple of days - coincidence? who knows.. just my 2 cents, but something you may want to look into. , Mom to Jes, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2000 Report Share Posted March 23, 2000 s Pre-K teacher is looking for a high calorie, protein Peanutbutter ball recipe. Once she gets it I will forward it on to everyone. a Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2000 Report Share Posted March 24, 2000 , Thanks a million for the suggestions. It is funny, you listed just about everything that he " likes " to eat. I don't know what has gotten into lately but he has started to eat! I am thrilled. His preschool teacher has even been giving him small prizes for finishing things at snack time. I hope this isn't a fluke! Judy (Matt 4 - RSS, IUGI, Failure to Thrive, G-tube) Re: Hello again > From: JBSalem@... > > I should have saved my email I sent several weeks ago. We had several visits > with a nutritionist about the issue of how to add calories easily. Besides > the easy things that pop to one's head... (cheese, yogurt, etc). Canola oil > added to food (not vegetable oil, canola is pretty tasteless). > > Other small things that have lots of calories. > > * Yoplait " Trix " yogurt. It is a small container but has something like 120 > calories! > * Meyer bologna. (one piece has, shoot, I think 90 calories). > * Taco Bell refried beans or side of rice. > * Don't laugh - Girl Scout Thin Mint cookies (one tiny cookie is 35 > calories!!!) > * Clif Bar (this is like a Power Bar, better tasting, and has 250 calories > in one small bar. Even if they only eat 1/3 bar, it's a lot. You can find > them at Trader Joe's, or the nutrition/sport area of a grocery store) > * Standard granola bars (120 calories in bar). > * The hot dogs with the most calories, I believe, are the Meyer > weiners. > > Hope this helps. > > > ------------------------------------------------------------------------ > GET A NEXTCARD VISA, in 30 seconds! Get rates > as low as 0.0% Intro APR and no hidden fees. > Apply NOW! > http://click./1/975/0/_/229381/_/953789233/ > ------------------------------------------------------------------------ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2000 Report Share Posted March 24, 2000 Hi , Thanks. I have never heard of Suplena. Does she need to be on a high protein diet? Would she tolerate Pediasure better? Judy Re: Hello again > From: jenwali848@... > > Hi Carmen, Judy, and any one else.... > Jes has a very hard time with volume, she is now on 1part Suplena to 4parts > pediasure. Suplena has TWICE the calories of pediasure, but also alot of > protien, I think it's an adult formula. That's why it is diluted w/ > pediasure. She can't tolerate it at night, (she can't tolerate much at night) > - it seems a little thicker (not much), but figure it would take longer to > digest, being so dense. She does fine during the day with it and she seems > stronger the past couple of days - coincidence? who knows.. > just my 2 cents, but something you may want to look into. > , Mom to Jes, > > ------------------------------------------------------------------------ > MAXIMIZE YOUR CARD, MINIMIZE YOUR RATE! > Get a NextCard Visa, in 30 seconds! Get rates as low as > 0.0% Intro or 9.9% Fixed APR and no hidden fees. > Apply NOW! > http://click./1/2122/0/_/229381/_/953791994/ > ------------------------------------------------------------------------ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2000 Report Share Posted March 26, 2000 Judy, Jes had never vomited (and rarely spit up as an infant!) until she got her g-tube and her volume goal was too high. Now it seems if we have her pump set 1cc/hr too high, it's all over. We have found the right ratio for her and VERY gradually increase it - every 2 weeks or so. So she hasn't vomitted in almost 2 weeks now. jennifer Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2000 Report Share Posted March 26, 2000 Jim, Jes has gained almost 3lbs (probably would've been a little more but she was sick about a month ago and lost about 10 oz). It's done wonderful for her! , Mom to Jes,(RSS?), Quote Link to comment Share on other sites More sharing options...
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