Guest guest Posted January 5, 2005 Report Share Posted January 5, 2005 , I remember Dr. telling me to use Jonah for the " underweight " photo for the Guidebook, as he is one of the most underweight kids she has had. She mentioned to me that he does eat by mouth, and that he reminded her of -- can't figure out where the weight goes!!!! I know this sounds silly, but try not to worry. You guys are awesome parents and are doing everything you can. If after all this, he needs a feeding tube, you will know that he absolutely needs it -- you tried everything else. I have never met a parent yet whose child got a feeding tube and they didn't say " gosh, why didn't we get this a long time ago. " One day at a time. Re the easing of the constipation, when started Miralax again, and the constipation improved, she gained about 2 pounds in the next 3 months. Let's cross our fingers that something similar happens to Jonah! Salem > Hi all, > This is , Jonah's mom. First of all if is reading this, CONGRATULATIONS! I am so happy for you, I remember our talk at the get together. Also, Pat, that is great news about eating pizza! > > We saw Dr. H. on Monday and the news was real tough. Jonah weighed 3 ounces less than he did at our last visit 2 months ago. He was very constipated and we upped his Miralax and is no longer constipated. He might have lost a little from that, but after two months of eating better he should have gained. Dr. H. thinks he may be one of those kids who needs a lot of calories. She is giving us 3 months and upped his Periactin and told us to increase the calories per once of his formula. If at our next visit, he has not gained, we are looking at a feeding tube. She thinks he will also probably need the triple procedure. Needless to say, we are quite upset. Jonah is 3 1/2, so it won't be easy. I can't stand the thought of him going through any pain or being scarred. > > Well, sorry it is so long, please keep us in your prayers. I hope everyone is well. > , Jonah's mom. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2005 Report Share Posted January 6, 2005 Hi , I am sorry to hear that Jonah lost weight. I understand being concerned about the triple procedure. We tried everything to avoid it with , but finally did it at age 2 for him. After we did it, we realized that for it was the best thing we could have done and that we probably should have done it sooner. Hang in there, Judith, Steve, (RSS) and (non RSS) 4 3/4 year old twins Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2005 Report Share Posted January 6, 2005 , Hang in there! I can remember our first visit to Dr. H. Alyssa was almost 2 and was 17lbs and 32inches. We had seen Dr. H 3months before at the convention and she said she had one of the largest caloric deficits she had ever seen. We tried Periactin for 3 months and though it helped it was not enough and we made the decision for a tube. The procedure itself did not take long. The worst part for us was that Alyssa had an itching side effect from the morphine they gave her. It made her hysterical. They thought it must just be the pain and increased the dosage twice before my mom suggested it might be causing itching. After they stopped the itching and switched pain killers she did great. The first 24 hrs she was pretty sore, but after that she was pretty good. The tube site was and still is easy to take care of. After her surgery she had a foley tube. It's a long tube that hangs from the stoma site. Then after 3 months we put in a button and we attach extensions while she's being fed thru the tube. The button is great, her site requires pretty much no care now a year later and hasn't for at least 6 months. The peace of mind from the tube was more than worth it. IT is especially great when she is sick. No more puking up medicine or the constant eat this, eat that, and her response of no thanks. We tried EVERYTHING to avoid the tube, I obsessed about her calories and weight. And I am glad we exhausted all alternatives first. But I am sooo glad she has it now. Her scar is pretty faint now, and the stoma hole is small. Alyssa has a 12 fr button, which is the smallest hole they make. Someday when she's wearing her bikini she may hate that little scar, but then again she may be glad it's there, since it will be the reason she is healthy and taller. Her growth has sky rocketed since her tube was placed. In a year she has gone up from the 10th% to the 50th% for height. Talk about your catch up growth!! Well, I hope this helps. I remember Pat telling me 's story and it made it easier for us. Good Luck and whatever you decide will be the best decision for your family. Dayna, Mom to Alyssa-3, RSS 26.5lbs and 37.5 inches. And Lauryn my little chunk-a-lunk 11wks _____ From: Berlin/Gene Bowen Sent: Wednesday, January 05, 2005 8:36 PM To: RSS-Support Subject: a lot of things! Hi all, This is , Jonah's mom. First of all if is reading this, CONGRATULATIONS! I am so happy for you, I remember our talk at the get together. Also, Pat, that is great news about eating pizza! We saw Dr. H. on Monday and the news was real tough. Jonah weighed 3 ounces less than he did at our last visit 2 months ago. He was very constipated and we upped his Miralax and is no longer constipated. He might have lost a little from that, but after two months of eating better he should have gained. Dr. H. thinks he may be one of those kids who needs a lot of calories. She is giving us 3 months and upped his Periactin and told us to increase the calories per once of his formula. If at our next visit, he has not gained, we are looking at a feeding tube. She thinks he will also probably need the triple procedure. Needless to say, we are quite upset. Jonah is 3 1/2, so it won't be easy. I can't stand the thought of him going through any pain or being scarred. Well, sorry it is so long, please keep us in your prayers. I hope everyone is well. , Jonah's mom. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2005 Report Share Posted January 8, 2005 Dayna, Mom to Alyssa-3, RSS 26.5lbs and 37.5 inches. And Lauryn my little chunk-a-lunk 11wks WOW! is your daughters weight and height just from the g-tube? From food? Is she on gh? My son is 3 started periactin 3 weeks ago, he is 23.5lbs and 34 3/8 inches. Is she on periactin? How big was she before? a lot of things! > > > > Hi all, > This is , Jonah's mom. First of all if is reading this, > CONGRATULATIONS! I am so happy for you, I remember our talk at the get > together. Also, Pat, that is great news about eating pizza! > > We saw Dr. H. on Monday and the news was real tough. Jonah weighed 3 ounces > less than he did at our last visit 2 months ago. He was very constipated > and we upped his Miralax and is no longer constipated. He might have lost a > little from that, but after two months of eating better he should have > gained. Dr. H. thinks he may be one of those kids who needs a lot of > calories. She is giving us 3 months and upped his Periactin and told us to > increase the calories per once of his formula. If at our next visit, he has > not gained, we are looking at a feeding tube. She thinks he will also > probably need the triple procedure. Needless to say, we are quite upset. > Jonah is 3 1/2, so it won't be easy. I can't stand the thought of him going > through any pain or being scarred. > > Well, sorry it is so long, please keep us in your prayers. I hope everyone > is well. > , Jonah's mom. > > Quote Link to comment Share on other sites More sharing options...
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