Guest guest Posted February 24, 2012 Report Share Posted February 24, 2012 Bless your heart Kim! Emm is almost three now and I feel the g-tube at just over a year made things so much easier. She wad still eating like a newborn. I would feed her thickened liquid every 2 hours and she generally took in about 4 oz a feeding. She had no time to develop new skills since all her time was spent on my lap eating. She never and still does not hold her bottle. She also needed to gain weight for her heart. She needs surgery to repair two defects and can now have heart cath instead of open heart surgery with her current weight. Yay!! I still do everything I can to keep oral stimulation going so she does not lose oral skills. She has 2 bottles of thickened pediasure and 3 tube feeds per day. She takes 2nd foods but is hit and miss with appetite for those. I make her little " bags " for chewing and tasting so she will learn to bite down and also to control saliva. We use anything from bubble gum to twizzlers or crackers in them. They are safe she can taste but not get chunks and choke. Idk if any of this helps but my prayers are with you. I too was afraid I was giving in to tube but wow I wish now I would of considered Emm! She is thriving! After the surgery she was crawling then walking within 6 months! Something I was told not to expect. Hang in there! If I can help feel free to email or call. . ~Jodi mom to Emm almost 3 > I have just about had it with trying to feed my son. It's this constant daily battle. It's soooooo frustrating. My husband has always been weird about the g-tube because I think he views it as us giving up and taking the " easy route " . I don't think he'd ever admit to that. He also rarely feeds our son, which is fine, not complaining about that. Just don't think he always understands how frustrating it is. > > Anyway, Just wanting to know how your kids came to have a gtube, for those children that do. My son is not on the charts weight wise and never has been (height wise he tops them). His eating seemed to be getting better, but now it seems like he's eating less and less. He still drinks infant formula fortified to a million calories. I also give him solid foods two-three times a day. It takes 30-90 minutes for each of these eating periods. Some days I skip a solid food meal so he can spend more time on the floor playing or in his gait trainer. He also barely actually eats any of this solid food. He gags a lot and spits most of it out. I usually give him a sippy cup of half and half or fortified formula to go with. That's where most of the fat and cals come from. Anyway, I have a checkup with his pediatrician on Monday and I was going to ask her about revisiting the g tube, maybe doing a swallow study too. I think if he had more meat on his bones he might start meeting some of his milestones. He's 16 months and can sit up unassisted as long as I sit him up and it's only for short periods, depends on what he's doing. He hasn't any teeth yet either and doesn't crawl. He rolls to get around. He has cp on his right side and hearing loss. > > Also, everyone is always asking me if he points to things he wants, which he doesn't. Do your kids point? When did they start pointing? Just had a speech eval which brought up a thousand questions I hadn't even thought of. So now I'm obsessed with getting him to point. Seriously, why do we do these things to ourselves? > > Thanks for reading my rant. Having a special needs child can be so rewarding, but some days I just wanna rip out all of my hair. I guess that's true of all children because somedays I'd like the gypsies to take my " normal " and talkative 8 yr old. :-) > > Peace and love to you all. > > Kim > > “I am learning all the time. The tombstone will be my diploma.†> — Eartha Kitt > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2012 Report Share Posted February 24, 2012 Kim, I'm new to the group so I don't know a lot of your story, but was wondering if you and your son see an occupational therapist for the feeding of solids? A good OT should be able to give you pointers and teach you therapies to help with the gagging and spitting. Elara used to have severe gagging and vomitting issues and now eats like a champ. She is 18 months old, and was tube fed for 13 months. Elara doesn't point for things she wants, but she will gesture towards things (toys, soother, mom, dad, etc.) by reaching out with her arm and squising her hand open and closed. She does not " point " . We are working on getting her to point. I got one of those old school fisher price cash registers that have the small round push buttons. I'm trying to teach her to push them down with one finger. Our PT said before she points for something, she needs to learn to put her hand in that position with play. It is all very stressful isn't it!! Elara is my first child, and sometimes I feel like a bad parent because she is so far behind. I don't know what it's like to have a " normal " first child experience developmentally, and because she is so delayed I'm quite hard on myself. I've been obsessive about her getting up onto her hands so she can crawl for a good 5 months!!! Her arms are just too weak! I drive myself crazy! haha! Tara > I have just about had it with trying to feed my son. It's this constant daily battle. It's soooooo frustrating. My husband has always been weird about the g-tube because I think he views it as us giving up and taking the " easy route " . I don't think he'd ever admit to that. He also rarely feeds our son, which is fine, not complaining about that. Just don't think he always understands how frustrating it is. > > Anyway, Just wanting to know how your kids came to have a gtube, for those children that do. My son is not on the charts weight wise and never has been (height wise he tops them). His eating seemed to be getting better, but now it seems like he's eating less and less. He still drinks infant formula fortified to a million calories. I also give him solid foods two-three times a day. It takes 30-90 minutes for each of these eating periods. Some days I skip a solid food meal so he can spend more time on the floor playing or in his gait trainer. He also barely actually eats any of this solid food. He gags a lot and spits most of it out. I usually give him a sippy cup of half and half or fortified formula to go with. That's where most of the fat and cals come from. Anyway, I have a checkup with his pediatrician on Monday and I was going to ask her about revisiting the g tube, maybe doing a swallow study too. I think if he had more meat on his bones he might start meeting some of his milestones. He's 16 months and can sit up unassisted as long as I sit him up and it's only for short periods, depends on what he's doing. He hasn't any teeth yet either and doesn't crawl. He rolls to get around. He has cp on his right side and hearing loss. > > Also, everyone is always asking me if he points to things he wants, which he doesn't. Do your kids point? When did they start pointing? Just had a speech eval which brought up a thousand questions I hadn't even thought of. So now I'm obsessed with getting him to point. Seriously, why do we do these things to ourselves? > > Thanks for reading my rant. Having a special needs child can be so rewarding, but some days I just wanna rip out all of my hair. I guess that's true of all children because somedays I'd like the gypsies to take my " normal " and talkative 8 yr old. :-) > > Peace and love to you all. > > Kim > > “I am learning all the time. The tombstone will be my diploma.” > — Eartha Kitt > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2012 Report Share Posted February 25, 2012 After my sons speech eval we went around trying to point at everything too. I asked around and apparently most kids point to things they want - not mine, BUT my son is a twin, and even his " normal " brother wont lift a finger to tell me what he wants. They are 13 months. He also will fall over when he sits (and I have to put him into sit too), still lacks protective instincts so he just goes right down. He seems to fall more now when he wants to move and doesnt know how. As far as eating, he is getting better, but still doesnt chew anything so we stick to mushy or soft foods that he can suck on. It takes him much, much longer to eat than his brother and he tires easily so I feel like Im feeding him all day long, but my son enjoys eating, he loves food and is only weak on one side. Hes also made it to the 20th%. From everything Ive read, I wouldnt be afraid to at least ask about the gtube, he needs his nutrition, and people say it makes all the difference and that they can still eat by mouth. Good luck. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2012 Report Share Posted February 25, 2012 My 10 mo. son had a feeding study this past Thursday. He was aspirating on liquids and they were not confident about solids. We are currently in the hospital. They placed a feeding tube through his nose. He will be on it for 6 weeks. Because his tongue falls a little back they also wanted to monitor his oxygen saturation. It is good 95-100%. So no tracheotomy. I was very scared that they would have to go that route. In 6 weeks the docs will evaluate his progress and see if he will be taken off or if a button will be necessary. A few days a go I was very upset. I felt like a failure. He tried so hard to drink, but it was not working. He also has some inflammation from his reflux. But, today I feel better. He is full and happy. He wants to nurse badly, but he will soon get over that. He was down to 15 lbs and seemed tired all the time. I was also wasting so much time feeding him. I am worried that he may lose his oral abilities. Thanks for the ideas. I got him a few chewiness to bite on. He also likes the thick pretzels. He can't bite through those. I hope he will get stronger in the next 6 weeks. His head control is so much better in just 2 days. Thanks for your story. I now know I am doing the right thing for hum. Julissa Sent from my iPad > Bless your heart Kim! Emm is almost three now and I feel the g-tube at just over a year made things so much easier. She wad still eating like a newborn. I would feed her thickened liquid every 2 hours and she generally took in about 4 oz a feeding. She had no time to develop new skills since all her time was spent on my lap eating. She never and still does not hold her bottle. She also needed to gain weight for her heart. She needs surgery to repair two defects and can now have heart cath instead of open heart surgery with her current weight. Yay!! I still do everything I can to keep oral stimulation going so she does not lose oral skills. She has 2 bottles of thickened pediasure and 3 tube feeds per day. She takes 2nd foods but is hit and miss with appetite for those. I make her little " bags " for chewing and tasting so she will learn to bite down and also to control saliva. We use anything from bubble gum to twizzlers or crackers in them. They are safe she can taste but not get chunks and choke. Idk if any of this helps but my prayers are with you. I too was afraid I was giving in to tube but wow I wish now I would of considered Emm! She is thriving! After the surgery she was crawling then walking within 6 months! Something I was told not to expect. Hang in there! If I can help feel free to email or call. . > > ~Jodi mom to Emm almost 3 > > > > > I have just about had it with trying to feed my son. It's this constant daily battle. It's soooooo frustrating. My husband has always been weird about the g-tube because I think he views it as us giving up and taking the " easy route " . I don't think he'd ever admit to that. He also rarely feeds our son, which is fine, not complaining about that. Just don't think he always understands how frustrating it is. > > > > Anyway, Just wanting to know how your kids came to have a gtube, for those children that do. My son is not on the charts weight wise and never has been (height wise he tops them). His eating seemed to be getting better, but now it seems like he's eating less and less. He still drinks infant formula fortified to a million calories. I also give him solid foods two-three times a day. It takes 30-90 minutes for each of these eating periods. Some days I skip a solid food meal so he can spend more time on the floor playing or in his gait trainer. He also barely actually eats any of this solid food. He gags a lot and spits most of it out. I usually give him a sippy cup of half and half or fortified formula to go with. That's where most of the fat and cals come from. Anyway, I have a checkup with his pediatrician on Monday and I was going to ask her about revisiting the g tube, maybe doing a swallow study too. I think if he had more meat on his bones he might start meeting some of his milestones. He's 16 months and can sit up unassisted as long as I sit him up and it's only for short periods, depends on what he's doing. He hasn't any teeth yet either and doesn't crawl. He rolls to get around. He has cp on his right side and hearing loss. > > > > Also, everyone is always asking me if he points to things he wants, which he doesn't. Do your kids point? When did they start pointing? Just had a speech eval which brought up a thousand questions I hadn't even thought of. So now I'm obsessed with getting him to point. Seriously, why do we do these things to ourselves? > > > > Thanks for reading my rant. Having a special needs child can be so rewarding, but some days I just wanna rip out all of my hair. I guess that's true of all children because somedays I'd like the gypsies to take my " normal " and talkative 8 yr old. :-) > > > > Peace and love to you all. > > > > Kim > > > > “I am learning all the time. The tombstone will be my diploma.†> > — Eartha Kitt > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2012 Report Share Posted February 25, 2012 I buy a nylon organza material (little hard to find) and sew a simple tube for emm. I make it long enough I can hold on to it tight after it gets wet from drool! As long as material has no glitter or anything it's safe. I have even used handkerchief material like little older ladies would carry and made some by just filling and tying with dental floss. Emm did not have a bite and since doing this she " chews " and gets very excited when she sees me get ready for chewing. I do have to watch and make sure she doesn't get too much saliva and not swallow. Just watch for gurgles and watery eyes. Good sign need to back off. We also have a z-vibe for oral stim. As far as pointing she does some now using her middle finger. She is just beginning to sign. We also use her iPad. Our best form of communication has been picture boards. I take pics of everything!! Laminate them and affix Velcro to back. We have several thick posterboards set up. One is for food/drink another is let's play and last one is today...this way she knows if we are going somewhere etc. I have pics of therapists drs our car etc. Pics of walmart her great gma...you get the idea. If it's a rainy day I take her stroller pic off for example so she understands we can't go out for a walk. She is doing much better with this system. It took a little while. I also have a 3 ring binder with her pics in a pencil case inside and Velcro across the front. We are still working on this system when we are out and about. Sounds crazy but it's a system everyone can use. Hope this helps:) ~Jodi mom to Emmalee > My 10 mo. son had a feeding study this past Thursday. He was aspirating on liquids and they were not confident about solids. We are currently in the hospital. They placed a feeding tube through his nose. He will be on it for 6 weeks. Because his tongue falls a little back they also wanted to monitor his oxygen saturation. It is good 95-100%. So no tracheotomy. I was very scared that they would have to go that route. In 6 weeks the docs will evaluate his progress and see if he will be taken off or if a button will be necessary. > > A few days a go I was very upset. I felt like a failure. He tried so hard to drink, but it was not working. He also has some inflammation from his reflux. But, today I feel better. He is full and happy. He wants to nurse badly, but he will soon get over that. He was down to 15 lbs and seemed tired all the time. I was also wasting so much time feeding him. I am worried that he may lose his oral abilities. Thanks for the ideas. I got him a few chewiness to bite on. He also likes the thick pretzels. He can't bite through those. I hope he will get stronger in the next 6 weeks. His head control is so much better in just 2 days. > > Thanks for your story. I now know I am doing the right thing for hum. Julissa > > Sent from my iPad > > > > > Bless your heart Kim! Emm is almost three now and I feel the g-tube at just over a year made things so much easier. She wad still eating like a newborn. I would feed her thickened liquid every 2 hours and she generally took in about 4 oz a feeding. She had no time to develop new skills since all her time was spent on my lap eating. She never and still does not hold her bottle. She also needed to gain weight for her heart. She needs surgery to repair two defects and can now have heart cath instead of open heart surgery with her current weight. Yay!! I still do everything I can to keep oral stimulation going so she does not lose oral skills. She has 2 bottles of thickened pediasure and 3 tube feeds per day. She takes 2nd foods but is hit and miss with appetite for those. I make her little " bags " for chewing and tasting so she will learn to bite down and also to control saliva. We use anything from bubble gum to twizzlers or crackers in them. They are safe she can taste but not get chunks and choke. Idk if any of this helps but my prayers are with you. I too was afraid I was giving in to tube but wow I wish now I would of considered Emm! She is thriving! After the surgery she was crawling then walking within 6 months! Something I was told not to expect. Hang in there! If I can help feel free to email or call. . > > > > ~Jodi mom to Emm almost 3 > > > > > > > > > I have just about had it with trying to feed my son. It's this constant daily battle. It's soooooo frustrating. My husband has always been weird about the g-tube because I think he views it as us giving up and taking the " easy route " . I don't think he'd ever admit to that. He also rarely feeds our son, which is fine, not complaining about that. Just don't think he always understands how frustrating it is. > > > > > > Anyway, Just wanting to know how your kids came to have a gtube, for those children that do. My son is not on the charts weight wise and never has been (height wise he tops them). His eating seemed to be getting better, but now it seems like he's eating less and less. He still drinks infant formula fortified to a million calories. I also give him solid foods two-three times a day. It takes 30-90 minutes for each of these eating periods. Some days I skip a solid food meal so he can spend more time on the floor playing or in his gait trainer. He also barely actually eats any of this solid food. He gags a lot and spits most of it out. I usually give him a sippy cup of half and half or fortified formula to go with. That's where most of the fat and cals come from. Anyway, I have a checkup with his pediatrician on Monday and I was going to ask her about revisiting the g tube, maybe doing a swallow study too. I think if he had more meat on his bones he might start meeting some of his milestones. He's 16 months and can sit up unassisted as long as I sit him up and it's only for short periods, depends on what he's doing. He hasn't any teeth yet either and doesn't crawl. He rolls to get around. He has cp on his right side and hearing loss. > > > > > > Also, everyone is always asking me if he points to things he wants, which he doesn't. Do your kids point? When did they start pointing? Just had a speech eval which brought up a thousand questions I hadn't even thought of. So now I'm obsessed with getting him to point. Seriously, why do we do these things to ourselves? > > > > > > Thanks for reading my rant. Having a special needs child can be so rewarding, but some days I just wanna rip out all of my hair. I guess that's true of all children because somedays I'd like the gypsies to take my " normal " and talkative 8 yr old. :-) > > > > > > Peace and love to you all. > > > > > > Kim > > > > > > “I am learning all the time. The tombstone will be my diploma.†> > > — Eartha Kitt > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2012 Report Share Posted February 25, 2012 Thanks so much Jodi. It's always so nice to hear others experiences. Love this group!! I think I have taken myself out of the equation and that is why I am not opposed to the tube. My son is strong and doing well in most other areas, but he's 16 months and just barely 20 lbs. what really tipped the scales for me as far as the gtube was last week the stomach flu ran through my house (ugh!). Anyway, I started thinking what if he got a respiratory infection and was out of commission for more than just a day or two, how the hell am I gonna feed him. When he's sick or feverish he usually rejects his bottle and throws up medicine. I am also pretty sure his pediatrician is not gonna be overly impressed with his 3 month gain. He DID gain but not a ton. And she'll wanna discuss the gtube again. I guess I'm preparing myself for it. So what's the gtube surgery like? Where is the tube placed, in the side? Thanks! “I am learning all the time. The tombstone will be my diploma.†— Eartha Kitt > Bless your heart Kim! Emm is almost three now and I feel the g-tube at just over a year made things so much easier. She wad still eating like a newborn. I would feed her thickened liquid every 2 hours and she generally took in about 4 oz a feeding. She had no time to develop new skills since all her time was spent on my lap eating. She never and still does not hold her bottle. She also needed to gain weight for her heart. She needs surgery to repair two defects and can now have heart cath instead of open heart surgery with her current weight. Yay!! I still do everything I can to keep oral stimulation going so she does not lose oral skills. She has 2 bottles of thickened pediasure and 3 tube feeds per day. She takes 2nd foods but is hit and miss with appetite for those. I make her little " bags " for chewing and tasting so she will learn to bite down and also to control saliva. We use anything from bubble gum to twizzlers or crackers in them. They are safe she can taste but not get chunks and choke. Idk if any of this helps but my prayers are with you. I too was afraid I was giving in to tube but wow I wish now I would of considered Emm! She is thriving! After the surgery she was crawling then walking within 6 months! Something I was told not to expect. Hang in there! If I can help feel free to email or call. . > > ~Jodi mom to Emm almost 3 > > > > > I have just about had it with trying to feed my son. It's this constant daily battle. It's soooooo frustrating. My husband has always been weird about the g-tube because I think he views it as us giving up and taking the " easy route " . I don't think he'd ever admit to that. He also rarely feeds our son, which is fine, not complaining about that. Just don't think he always understands how frustrating it is. > > > > Anyway, Just wanting to know how your kids came to have a gtube, for those children that do. My son is not on the charts weight wise and never has been (height wise he tops them). His eating seemed to be getting better, but now it seems like he's eating less and less. He still drinks infant formula fortified to a million calories. I also give him solid foods two-three times a day. It takes 30-90 minutes for each of these eating periods. Some days I skip a solid food meal so he can spend more time on the floor playing or in his gait trainer. He also barely actually eats any of this solid food. He gags a lot and spits most of it out. I usually give him a sippy cup of half and half or fortified formula to go with. That's where most of the fat and cals come from. Anyway, I have a checkup with his pediatrician on Monday and I was going to ask her about revisiting the g tube, maybe doing a swallow study too. I think if he had more meat on his bones he might start meeting some of his milestones. He's 16 months and can sit up unassisted as long as I sit him up and it's only for short periods, depends on what he's doing. He hasn't any teeth yet either and doesn't crawl. He rolls to get around. He has cp on his right side and hearing loss. > > > > Also, everyone is always asking me if he points to things he wants, which he doesn't. Do your kids point? When did they start pointing? Just had a speech eval which brought up a thousand questions I hadn't even thought of. So now I'm obsessed with getting him to point. Seriously, why do we do these things to ourselves? > > > > Thanks for reading my rant. Having a special needs child can be so rewarding, but some days I just wanna rip out all of my hair. I guess that's true of all children because somedays I'd like the gypsies to take my " normal " and talkative 8 yr old. :-) > > > > Peace and love to you all. > > > > Kim > > > > “I am learning all the time. The tombstone will be my diploma.†> > — Eartha Kitt > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2012 Report Share Posted February 25, 2012 Hi Tara, yeah my son has two OT's, two pt's, and soon to add a speech therapist. My ot is the one who helped this far to keep him gaining weight. His weight chart curves up from birth to now, it just doesn't lie on the scale. His head is also small for his age. As for the pointing, I've been so wrapped up in getting him to use his right hand that I've kind of forgot that he has a developing left hand. It just freaked me out when I went for my speech eval and I swear the pointing thing came up a half dozen times. He had congenital cmv and is deaf in one ear and has high frequency loss in the other ear, so pointing would really come in handy especially as he gets older. I'll have to work on that with his hands. Thanks! “I am learning all the time. The tombstone will be my diploma.†— Eartha Kitt > Kim, > > I'm new to the group so I don't know a lot of your story, but was wondering if you and your son see an occupational therapist for the feeding of solids? A good OT should be able to give you pointers and teach you therapies to help with the gagging and spitting. Elara used to have severe gagging and vomitting issues and now eats like a champ. She is 18 months old, and was tube fed for 13 months. > > Elara doesn't point for things she wants, but she will gesture towards things (toys, soother, mom, dad, etc.) by reaching out with her arm and squising her hand open and closed. She does not " point " . We are working on getting her to point. I got one of those old school fisher price cash registers that have the small round push buttons. I'm trying to teach her to push them down with one finger. Our PT said before she points for something, she needs to learn to put her hand in that position with play. > > It is all very stressful isn't it!! Elara is my first child, and sometimes I feel like a bad parent because she is so far behind. I don't know what it's like to have a " normal " first child experience developmentally, and because she is so delayed I'm quite hard on myself. I've been obsessive about her getting up onto her hands so she can crawl for a good 5 months!!! Her arms are just too weak! I drive myself crazy! haha! > > Tara > > >> I have just about had it with trying to feed my son. It's this constant daily battle. It's soooooo frustrating. My husband has always been weird about the g-tube because I think he views it as us giving up and taking the " easy route " . I don't think he'd ever admit to that. He also rarely feeds our son, which is fine, not complaining about that. Just don't think he always understands how frustrating it is. >> >> Anyway, Just wanting to know how your kids came to have a gtube, for those children that do. My son is not on the charts weight wise and never has been (height wise he tops them). His eating seemed to be getting better, but now it seems like he's eating less and less. He still drinks infant formula fortified to a million calories. I also give him solid foods two-three times a day. It takes 30-90 minutes for each of these eating periods. Some days I skip a solid food meal so he can spend more time on the floor playing or in his gait trainer. He also barely actually eats any of this solid food. He gags a lot and spits most of it out. I usually give him a sippy cup of half and half or fortified formula to go with. That's where most of the fat and cals come from. Anyway, I have a checkup with his pediatrician on Monday and I was going to ask her about revisiting the g tube, maybe doing a swallow study too. I think if he had more meat on his bones he might start meeting some of his milestones. He's 16 months and can sit up unassisted as long as I sit him up and it's only for short periods, depends on what he's doing. He hasn't any teeth yet either and doesn't crawl. He rolls to get around. He has cp on his right side and hearing loss. >> >> Also, everyone is always asking me if he points to things he wants, which he doesn't. Do your kids point? When did they start pointing? Just had a speech eval which brought up a thousand questions I hadn't even thought of. So now I'm obsessed with getting him to point. Seriously, why do we do these things to ourselves? >> >> Thanks for reading my rant. Having a special needs child can be so rewarding, but some days I just wanna rip out all of my hair. I guess that's true of all children because somedays I'd like the gypsies to take my " normal " and talkative 8 yr old. :-) >> >> Peace and love to you all. >> >> Kim >> >> �I am learning all the time. The tombstone will be my diploma.� >> � Eartha Kitt >> >> > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2012 Report Share Posted February 25, 2012 I love this picture book idea and picture system. As I've said before he's partially deaf and at risk for additional hearing loss due to congenital cmv, and these are great ideas. Thanks!! I'm going to be printing pics tomorrow to have them to work with while we are on vacation in a week. Can't wait to get away from all the docs and therapists for a minute!! Peace! “I am learning all the time. The tombstone will be my diploma.†— Eartha Kitt > I buy a nylon organza material (little hard to find) and sew a simple tube for emm. I make it long enough I can hold on to it tight after it gets wet from drool! As long as material has no glitter or anything it's safe. I have even used handkerchief material like little older ladies would carry and made some by just filling and tying with dental floss. Emm did not have a bite and since doing this she " chews " and gets very excited when she sees me get ready for chewing. I do have to watch and make sure she doesn't get too much saliva and not swallow. Just watch for gurgles and watery eyes. Good sign need to back off. We also have a z-vibe for oral stim. > > As far as pointing she does some now using her middle finger. She is just beginning to sign. We also use her iPad. Our best form of communication has been picture boards. I take pics of everything!! Laminate them and affix Velcro to back. We have several thick posterboards set up. One is for food/drink another is let's play and last one is today...this way she knows if we are going somewhere etc. I have pics of therapists drs our car etc. Pics of walmart her great gma...you get the idea. If it's a rainy day I take her stroller pic off for example so she understands we can't go out for a walk. She is doing much better with this system. It took a little while. I also have a 3 ring binder with her pics in a pencil case inside and Velcro across the front. We are still working on this system when we are out and about. Sounds crazy but it's a system everyone can use. > Hope this helps:) > > ~Jodi mom to Emmalee > > > > > My 10 mo. son had a feeding study this past Thursday. He was aspirating on liquids and they were not confident about solids. We are currently in the hospital. They placed a feeding tube through his nose. He will be on it for 6 weeks. Because his tongue falls a little back they also wanted to monitor his oxygen saturation. It is good 95-100%. So no tracheotomy. I was very scared that they would have to go that route. In 6 weeks the docs will evaluate his progress and see if he will be taken off or if a button will be necessary. > > > > A few days a go I was very upset. I felt like a failure. He tried so hard to drink, but it was not working. He also has some inflammation from his reflux. But, today I feel better. He is full and happy. He wants to nurse badly, but he will soon get over that. He was down to 15 lbs and seemed tired all the time. I was also wasting so much time feeding him. I am worried that he may lose his oral abilities. Thanks for the ideas. I got him a few chewiness to bite on. He also likes the thick pretzels. He can't bite through those. I hope he will get stronger in the next 6 weeks. His head control is so much better in just 2 days. > > > > Thanks for your story. I now know I am doing the right thing for hum. Julissa > > > > Sent from my iPad > > > > > > > > > Bless your heart Kim! Emm is almost three now and I feel the g-tube at just over a year made things so much easier. She wad still eating like a newborn. I would feed her thickened liquid every 2 hours and she generally took in about 4 oz a feeding. She had no time to develop new skills since all her time was spent on my lap eating. She never and still does not hold her bottle. She also needed to gain weight for her heart. She needs surgery to repair two defects and can now have heart cath instead of open heart surgery with her current weight. Yay!! I still do everything I can to keep oral stimulation going so she does not lose oral skills. She has 2 bottles of thickened pediasure and 3 tube feeds per day. She takes 2nd foods but is hit and miss with appetite for those. I make her little " bags " for chewing and tasting so she will learn to bite down and also to control saliva. We use anything from bubble gum to twizzlers or crackers in them. They are safe she can taste but not get chunks and choke. Idk if any of this helps but my prayers are with you. I too was afraid I was giving in to tube but wow I wish now I would of considered Emm! She is thriving! After the surgery she was crawling then walking within 6 months! Something I was told not to expect. Hang in there! If I can help feel free to email or call. . > > > > > > ~Jodi mom to Emm almost 3 > > > > > > > > > > > > > I have just about had it with trying to feed my son. It's this constant daily battle. It's soooooo frustrating. My husband has always been weird about the g-tube because I think he views it as us giving up and taking the " easy route " . I don't think he'd ever admit to that. He also rarely feeds our son, which is fine, not complaining about that. Just don't think he always understands how frustrating it is. > > > > > > > > Anyway, Just wanting to know how your kids came to have a gtube, for those children that do. My son is not on the charts weight wise and never has been (height wise he tops them). His eating seemed to be getting better, but now it seems like he's eating less and less. He still drinks infant formula fortified to a million calories. I also give him solid foods two-three times a day. It takes 30-90 minutes for each of these eating periods. Some days I skip a solid food meal so he can spend more time on the floor playing or in his gait trainer. He also barely actually eats any of this solid food. He gags a lot and spits most of it out. I usually give him a sippy cup of half and half or fortified formula to go with. That's where most of the fat and cals come from. Anyway, I have a checkup with his pediatrician on Monday and I was going to ask her about revisiting the g tube, maybe doing a swallow study too. I think if he had more meat on his bones he might start meeting some of his milestones. He's 16 months and can sit up unassisted as long as I sit him up and it's only for short periods, depends on what he's doing. He hasn't any teeth yet either and doesn't crawl. He rolls to get around. He has cp on his right side and hearing loss. > > > > > > > > Also, everyone is always asking me if he points to things he wants, which he doesn't. Do your kids point? When did they start pointing? Just had a speech eval which brought up a thousand questions I hadn't even thought of. So now I'm obsessed with getting him to point. Seriously, why do we do these things to ourselves? > > > > > > > > Thanks for reading my rant. Having a special needs child can be so rewarding, but some days I just wanna rip out all of my hair. I guess that's true of all children because somedays I'd like the gypsies to take my " normal " and talkative 8 yr old. :-) > > > > > > > > Peace and love to you all. > > > > > > > > Kim > > > > > > > > “I am learning all the time. The tombstone will be my diploma.†> > > > — Eartha Kitt > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2012 Report Share Posted February 25, 2012 Surgery was easy peasy!! Mind you I have an older daughter who ha had 6 surgeries most of them life-saving. So was simple. I fought the docs month by month. Emm weighed 16 pounds at time of surgery. It's bittersweet. She put on weight and no worries about aspiration but I am always thinking when can we remove it! I like that we don't lose our medicine and essential calories! Emm had RSV last year and it was great knowing she was still receiving nutrients and airway was protected. We stayed overnight when surgery was done and learned to care for tube. I am a nurse so I knew the routine but this is my baby!! We have a mic-key button. It looks similar to a valve in a beach ball. It's easy to care for once you get the hang of it. It is on Emms left side and although you can see it protruding a little it's not really that noticable. Emm does play with hers at times and has pulled it out once. We change it every 4 months here at home. Feel free to ask anything or call or text if you want. ~Jodi > Thanks so much Jodi. It's always so nice to hear others experiences. Love this group!! I think I have taken myself out of the equation and that is why I am not opposed to the tube. My son is strong and doing well in most other areas, but he's 16 months and just barely 20 lbs. what really tipped the scales for me as far as the gtube was last week the stomach flu ran through my house (ugh!). Anyway, I started thinking what if he got a respiratory infection and was out of commission for more than just a day or two, how the hell am I gonna feed him. When he's sick or feverish he usually rejects his bottle and throws up medicine. I am also pretty sure his pediatrician is not gonna be overly impressed with his 3 month gain. He DID gain but not a ton. And she'll wanna discuss the gtube again. I guess I'm preparing myself for it. > > So what's the gtube surgery like? Where is the tube placed, in the side? Thanks! > > “I am learning all the time. The tombstone will be my diploma.†> — Eartha Kitt > > > > > Bless your heart Kim! Emm is almost three now and I feel the g-tube at just over a year made things so much easier. She wad still eating like a newborn. I would feed her thickened liquid every 2 hours and she generally took in about 4 oz a feeding. She had no time to develop new skills since all her time was spent on my lap eating. She never and still does not hold her bottle. She also needed to gain weight for her heart. She needs surgery to repair two defects and can now have heart cath instead of open heart surgery with her current weight. Yay!! I still do everything I can to keep oral stimulation going so she does not lose oral skills. She has 2 bottles of thickened pediasure and 3 tube feeds per day. She takes 2nd foods but is hit and miss with appetite for those. I make her little " bags " for chewing and tasting so she will learn to bite down and also to control saliva. We use anything from bubble gum to twizzlers or crackers in them. They are safe she can taste but not get chunks and choke. Idk if any of this helps but my prayers are with you. I too was afraid I was giving in to tube but wow I wish now I would of considered Emm! She is thriving! After the surgery she was crawling then walking within 6 months! Something I was told not to expect. Hang in there! If I can help feel free to email or call. . > > > > ~Jodi mom to Emm almost 3 > > > > > > > > > I have just about had it with trying to feed my son. It's this constant daily battle. It's soooooo frustrating. My husband has always been weird about the g-tube because I think he views it as us giving up and taking the " easy route " . I don't think he'd ever admit to that. He also rarely feeds our son, which is fine, not complaining about that. Just don't think he always understands how frustrating it is. > > > > > > Anyway, Just wanting to know how your kids came to have a gtube, for those children that do. My son is not on the charts weight wise and never has been (height wise he tops them). His eating seemed to be getting better, but now it seems like he's eating less and less. He still drinks infant formula fortified to a million calories. I also give him solid foods two-three times a day. It takes 30-90 minutes for each of these eating periods. Some days I skip a solid food meal so he can spend more time on the floor playing or in his gait trainer. He also barely actually eats any of this solid food. He gags a lot and spits most of it out. I usually give him a sippy cup of half and half or fortified formula to go with. That's where most of the fat and cals come from. Anyway, I have a checkup with his pediatrician on Monday and I was going to ask her about revisiting the g tube, maybe doing a swallow study too. I think if he had more meat on his bones he might start meeting some of his milestones. He's 16 months and can sit up unassisted as long as I sit him up and it's only for short periods, depends on what he's doing. He hasn't any teeth yet either and doesn't crawl. He rolls to get around. He has cp on his right side and hearing loss. > > > > > > Also, everyone is always asking me if he points to things he wants, which he doesn't. Do your kids point? When did they start pointing? Just had a speech eval which brought up a thousand questions I hadn't even thought of. So now I'm obsessed with getting him to point. Seriously, why do we do these things to ourselves? > > > > > > Thanks for reading my rant. Having a special needs child can be so rewarding, but some days I just wanna rip out all of my hair. I guess that's true of all children because somedays I'd like the gypsies to take my " normal " and talkative 8 yr old. :-) > > > > > > Peace and love to you all. > > > > > > Kim > > > > > > “I am learning all the time. The tombstone will be my diploma.†> > > — Eartha Kitt > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2012 Report Share Posted February 25, 2012 Yes it's sad I go to walmart for a break!! I also have a teen and a tween. All girls! Bourne laminating sheets at walmart that are self sealing. In the school supply aisle. I call it the hundred dollar store by the time I leave! Emm also has hearing loss. Sensory issues cause her to not wear them. She also wears glasses. I also made picture book of her day. I called it " day in the life of a diva " and it's fitting. Lol. ~Jodi > I love this picture book idea and picture system. As I've said before he's partially deaf and at risk for additional hearing loss due to congenital cmv, and these are great ideas. Thanks!! I'm going to be printing pics tomorrow to have them to work with while we are on vacation in a week. Can't wait to get away from all the docs and therapists for a minute!! Peace! > > “I am learning all the time. The tombstone will be my diploma.†> — Eartha Kitt > > > > > I buy a nylon organza material (little hard to find) and sew a simple tube for emm. I make it long enough I can hold on to it tight after it gets wet from drool! As long as material has no glitter or anything it's safe. I have even used handkerchief material like little older ladies would carry and made some by just filling and tying with dental floss. Emm did not have a bite and since doing this she " chews " and gets very excited when she sees me get ready for chewing. I do have to watch and make sure she doesn't get too much saliva and not swallow. Just watch for gurgles and watery eyes. Good sign need to back off. We also have a z-vibe for oral stim. > > > > As far as pointing she does some now using her middle finger. She is just beginning to sign. We also use her iPad. Our best form of communication has been picture boards. I take pics of everything!! Laminate them and affix Velcro to back. We have several thick posterboards set up. One is for food/drink another is let's play and last one is today...this way she knows if we are going somewhere etc. I have pics of therapists drs our car etc. Pics of walmart her great gma...you get the idea. If it's a rainy day I take her stroller pic off for example so she understands we can't go out for a walk. She is doing much better with this system. It took a little while. I also have a 3 ring binder with her pics in a pencil case inside and Velcro across the front. We are still working on this system when we are out and about. Sounds crazy but it's a system everyone can use. > > Hope this helps:) > > > > ~Jodi mom to Emmalee > > > > > > > > > My 10 mo. son had a feeding study this past Thursday. He was aspirating on liquids and they were not confident about solids. We are currently in the hospital. They placed a feeding tube through his nose. He will be on it for 6 weeks. Because his tongue falls a little back they also wanted to monitor his oxygen saturation. It is good 95-100%. So no tracheotomy. I was very scared that they would have to go that route. In 6 weeks the docs will evaluate his progress and see if he will be taken off or if a button will be necessary. > > > > > > A few days a go I was very upset. I felt like a failure. He tried so hard to drink, but it was not working. He also has some inflammation from his reflux. But, today I feel better. He is full and happy. He wants to nurse badly, but he will soon get over that. He was down to 15 lbs and seemed tired all the time. I was also wasting so much time feeding him. I am worried that he may lose his oral abilities. Thanks for the ideas. I got him a few chewiness to bite on. He also likes the thick pretzels. He can't bite through those. I hope he will get stronger in the next 6 weeks. His head control is so much better in just 2 days. > > > > > > Thanks for your story. I now know I am doing the right thing for hum. Julissa > > > > > > Sent from my iPad > > > > > > > > > > > > > Bless your heart Kim! Emm is almost three now and I feel the g-tube at just over a year made things so much easier. She wad still eating like a newborn. I would feed her thickened liquid every 2 hours and she generally took in about 4 oz a feeding. She had no time to develop new skills since all her time was spent on my lap eating. She never and still does not hold her bottle. She also needed to gain weight for her heart. She needs surgery to repair two defects and can now have heart cath instead of open heart surgery with her current weight. Yay!! I still do everything I can to keep oral stimulation going so she does not lose oral skills. She has 2 bottles of thickened pediasure and 3 tube feeds per day. She takes 2nd foods but is hit and miss with appetite for those. I make her little " bags " for chewing and tasting so she will learn to bite down and also to control saliva. We use anything from bubble gum to twizzlers or crackers in them. They are safe she can taste but not get chunks and choke. Idk if any of this helps but my prayers are with you. I too was afraid I was giving in to tube but wow I wish now I would of considered Emm! She is thriving! After the surgery she was crawling then walking within 6 months! Something I was told not to expect. Hang in there! If I can help feel free to email or call. . > > > > > > > > ~Jodi mom to Emm almost 3 > > > > > > > > > > > > > > > > > I have just about had it with trying to feed my son. It's this constant daily battle. It's soooooo frustrating. My husband has always been weird about the g-tube because I think he views it as us giving up and taking the " easy route " . I don't think he'd ever admit to that. He also rarely feeds our son, which is fine, not complaining about that. Just don't think he always understands how frustrating it is. > > > > > > > > > > Anyway, Just wanting to know how your kids came to have a gtube, for those children that do. My son is not on the charts weight wise and never has been (height wise he tops them). His eating seemed to be getting better, but now it seems like he's eating less and less. He still drinks infant formula fortified to a million calories. I also give him solid foods two-three times a day. It takes 30-90 minutes for each of these eating periods. Some days I skip a solid food meal so he can spend more time on the floor playing or in his gait trainer. He also barely actually eats any of this solid food. He gags a lot and spits most of it out. I usually give him a sippy cup of half and half or fortified formula to go with. That's where most of the fat and cals come from. Anyway, I have a checkup with his pediatrician on Monday and I was going to ask her about revisiting the g tube, maybe doing a swallow study too. I think if he had more meat on his bones he might start meeting some of his milestones. He's 16 months and can sit up unassisted as long as I sit him up and it's only for short periods, depends on what he's doing. He hasn't any teeth yet either and doesn't crawl. He rolls to get around. He has cp on his right side and hearing loss. > > > > > > > > > > Also, everyone is always asking me if he points to things he wants, which he doesn't. Do your kids point? When did they start pointing? Just had a speech eval which brought up a thousand questions I hadn't even thought of. So now I'm obsessed with getting him to point. Seriously, why do we do these things to ourselves? > > > > > > > > > > Thanks for reading my rant. Having a special needs child can be so rewarding, but some days I just wanna rip out all of my hair. I guess that's true of all children because somedays I'd like the gypsies to take my " normal " and talkative 8 yr old. :-) > > > > > > > > > > Peace and love to you all. > > > > > > > > > > Kim > > > > > > > > > > “I am learning all the time. The tombstone will be my diploma.†> > > > > — Eartha Kitt > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2012 Report Share Posted February 25, 2012 Thank you all for so much info. Since we are going through this now it is comforting. I also like the picture book idea. Julissa Sent from my iPad > Surgery was easy peasy!! Mind you I have an older daughter who ha had 6 surgeries most of them life-saving. So was simple. I fought the docs month by month. Emm weighed 16 pounds at time of surgery. It's bittersweet. She put on weight and no worries about aspiration but I am always thinking when can we remove it! I like that we don't lose our medicine and essential calories! Emm had RSV last year and it was great knowing she was still receiving nutrients and airway was protected. We stayed overnight when surgery was done and learned to care for tube. I am a nurse so I knew the routine but this is my baby!! We have a mic-key button. It looks similar to a valve in a beach ball. It's easy to care for once you get the hang of it. It is on Emms left side and although you can see it protruding a little it's not really that noticable. Emm does play with hers at times and has pulled it out once. We change it every 4 months here at home. Feel free to ask anything or call or text if you want. > > ~Jodi > > > > > Thanks so much Jodi. It's always so nice to hear others experiences. Love this group!! I think I have taken myself out of the equation and that is why I am not opposed to the tube. My son is strong and doing well in most other areas, but he's 16 months and just barely 20 lbs. what really tipped the scales for me as far as the gtube was last week the stomach flu ran through my house (ugh!). Anyway, I started thinking what if he got a respiratory infection and was out of commission for more than just a day or two, how the hell am I gonna feed him. When he's sick or feverish he usually rejects his bottle and throws up medicine. I am also pretty sure his pediatrician is not gonna be overly impressed with his 3 month gain. He DID gain but not a ton. And she'll wanna discuss the gtube again. I guess I'm preparing myself for it. > > > > So what's the gtube surgery like? Where is the tube placed, in the side? Thanks! > > > > “I am learning all the time. The tombstone will be my diploma.†> > — Eartha Kitt > > > > > > > > > Bless your heart Kim! Emm is almost three now and I feel the g-tube at just over a year made things so much easier. She wad still eating like a newborn. I would feed her thickened liquid every 2 hours and she generally took in about 4 oz a feeding. She had no time to develop new skills since all her time was spent on my lap eating. She never and still does not hold her bottle. She also needed to gain weight for her heart. She needs surgery to repair two defects and can now have heart cath instead of open heart surgery with her current weight. Yay!! I still do everything I can to keep oral stimulation going so she does not lose oral skills. She has 2 bottles of thickened pediasure and 3 tube feeds per day. She takes 2nd foods but is hit and miss with appetite for those. I make her little " bags " for chewing and tasting so she will learn to bite down and also to control saliva. We use anything from bubble gum to twizzlers or crackers in them. They are safe she can taste but not get chunks and choke. Idk if any of this helps but my prayers are with you. I too was afraid I was giving in to tube but wow I wish now I would of considered Emm! She is thriving! After the surgery she was crawling then walking within 6 months! Something I was told not to expect. Hang in there! If I can help feel free to email or call. . > > > > > > ~Jodi mom to Emm almost 3 > > > > > > > > > > > > > I have just about had it with trying to feed my son. It's this constant daily battle. It's soooooo frustrating. My husband has always been weird about the g-tube because I think he views it as us giving up and taking the " easy route " . I don't think he'd ever admit to that. He also rarely feeds our son, which is fine, not complaining about that. Just don't think he always understands how frustrating it is. > > > > > > > > Anyway, Just wanting to know how your kids came to have a gtube, for those children that do. My son is not on the charts weight wise and never has been (height wise he tops them). His eating seemed to be getting better, but now it seems like he's eating less and less. He still drinks infant formula fortified to a million calories. I also give him solid foods two-three times a day. It takes 30-90 minutes for each of these eating periods. Some days I skip a solid food meal so he can spend more time on the floor playing or in his gait trainer. He also barely actually eats any of this solid food. He gags a lot and spits most of it out. I usually give him a sippy cup of half and half or fortified formula to go with. That's where most of the fat and cals come from. Anyway, I have a checkup with his pediatrician on Monday and I was going to ask her about revisiting the g tube, maybe doing a swallow study too. I think if he had more meat on his bones he might start meeting some of his milestones. He's 16 months and can sit up unassisted as long as I sit him up and it's only for short periods, depends on what he's doing. He hasn't any teeth yet either and doesn't crawl. He rolls to get around. He has cp on his right side and hearing loss. > > > > > > > > Also, everyone is always asking me if he points to things he wants, which he doesn't. Do your kids point? When did they start pointing? Just had a speech eval which brought up a thousand questions I hadn't even thought of. So now I'm obsessed with getting him to point. Seriously, why do we do these things to ourselves? > > > > > > > > Thanks for reading my rant. Having a special needs child can be so rewarding, but some days I just wanna rip out all of my hair. I guess that's true of all children because somedays I'd like the gypsies to take my " normal " and talkative 8 yr old. :-) > > > > > > > > Peace and love to you all. > > > > > > > > Kim > > > > > > > > “I am learning all the time. The tombstone will be my diploma.†> > > > — Eartha Kitt > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2012 Report Share Posted February 25, 2012 Wow I was all over the place with that email! Emm has hearing aids but is over stimulated when wearing them. That part didn't make it from my head to the email!! Mom brain!! I am a single mom so I get scatterbrained at times when multi-tasking!! Lol. My heart is with both of you Kim and julissa. I remember feeling like am I ever going to feel I can do this. Do what's best or right. I have learned to let go and let God! I put my big girl pants on and dug in. Hard to believe it's been almost 3 years and I'm now one of the experienced moms! ~Jodi > Yes it's sad I go to walmart for a break!! I also have a teen and a tween. All girls! Bourne laminating sheets at walmart that are self sealing. In the school supply aisle. I call it the hundred dollar store by the time I leave! Emm also has hearing loss. Sensory issues cause her to not wear them. She also wears glasses. I also made picture book of her day. I called it " day in the life of a diva " and it's fitting. Lol. > > ~Jodi > > > > > I love this picture book idea and picture system. As I've said before he's partially deaf and at risk for additional hearing loss due to congenital cmv, and these are great ideas. Thanks!! I'm going to be printing pics tomorrow to have them to work with while we are on vacation in a week. Can't wait to get away from all the docs and therapists for a minute!! Peace! > > > > “I am learning all the time. The tombstone will be my diploma.†> > — Eartha Kitt > > > > > > > > > I buy a nylon organza material (little hard to find) and sew a simple tube for emm. I make it long enough I can hold on to it tight after it gets wet from drool! As long as material has no glitter or anything it's safe. I have even used handkerchief material like little older ladies would carry and made some by just filling and tying with dental floss. Emm did not have a bite and since doing this she " chews " and gets very excited when she sees me get ready for chewing. I do have to watch and make sure she doesn't get too much saliva and not swallow. Just watch for gurgles and watery eyes. Good sign need to back off. We also have a z-vibe for oral stim. > > > > > > As far as pointing she does some now using her middle finger. She is just beginning to sign. We also use her iPad. Our best form of communication has been picture boards. I take pics of everything!! Laminate them and affix Velcro to back. We have several thick posterboards set up. One is for food/drink another is let's play and last one is today...this way she knows if we are going somewhere etc. I have pics of therapists drs our car etc. Pics of walmart her great gma...you get the idea. If it's a rainy day I take her stroller pic off for example so she understands we can't go out for a walk. She is doing much better with this system. It took a little while. I also have a 3 ring binder with her pics in a pencil case inside and Velcro across the front. We are still working on this system when we are out and about. Sounds crazy but it's a system everyone can use. > > > Hope this helps:) > > > > > > ~Jodi mom to Emmalee > > > > > > > > > > > > > My 10 mo. son had a feeding study this past Thursday. He was aspirating on liquids and they were not confident about solids. We are currently in the hospital. They placed a feeding tube through his nose. He will be on it for 6 weeks. Because his tongue falls a little back they also wanted to monitor his oxygen saturation. It is good 95-100%. So no tracheotomy. I was very scared that they would have to go that route. In 6 weeks the docs will evaluate his progress and see if he will be taken off or if a button will be necessary. > > > > > > > > A few days a go I was very upset. I felt like a failure. He tried so hard to drink, but it was not working. He also has some inflammation from his reflux. But, today I feel better. He is full and happy. He wants to nurse badly, but he will soon get over that. He was down to 15 lbs and seemed tired all the time. I was also wasting so much time feeding him. I am worried that he may lose his oral abilities. Thanks for the ideas. I got him a few chewiness to bite on. He also likes the thick pretzels. He can't bite through those. I hope he will get stronger in the next 6 weeks. His head control is so much better in just 2 days. > > > > > > > > Thanks for your story. I now know I am doing the right thing for hum. Julissa > > > > > > > > Sent from my iPad > > > > > > > > > > > > > > > > > Bless your heart Kim! Emm is almost three now and I feel the g-tube at just over a year made things so much easier. She wad still eating like a newborn. I would feed her thickened liquid every 2 hours and she generally took in about 4 oz a feeding. She had no time to develop new skills since all her time was spent on my lap eating. She never and still does not hold her bottle. She also needed to gain weight for her heart. She needs surgery to repair two defects and can now have heart cath instead of open heart surgery with her current weight. Yay!! I still do everything I can to keep oral stimulation going so she does not lose oral skills. She has 2 bottles of thickened pediasure and 3 tube feeds per day. She takes 2nd foods but is hit and miss with appetite for those. I make her little " bags " for chewing and tasting so she will learn to bite down and also to control saliva. We use anything from bubble gum to twizzlers or crackers in them. They are safe she can taste but not get chunks and choke. Idk if any of this helps but my prayers are with you. I too was afraid I was giving in to tube but wow I wish now I would of considered Emm! She is thriving! After the surgery she was crawling then walking within 6 months! Something I was told not to expect. Hang in there! If I can help feel free to email or call. . > > > > > > > > > > ~Jodi mom to Emm almost 3 > > > > > > > > > > On Feb 24, 2012, at 9:32 PM, Kim Throgmartin wrote: > > > > > > > > > > > I have just about had it with trying to feed my son. It's this constant daily battle. It's soooooo frustrating. My husband has always been weird about the g-tube because I think he views it as us giving up and taking the " easy route " . I don't think he'd ever admit to that. He also rarely feeds our son, which is fine, not complaining about that. Just don't think he always understands how frustrating it is. > > > > > > > > > > > > Anyway, Just wanting to know how your kids came to have a gtube, for those children that do. My son is not on the charts weight wise and never has been (height wise he tops them). His eating seemed to be getting better, but now it seems like he's eating less and less. He still drinks infant formula fortified to a million calories. I also give him solid foods two-three times a day. It takes 30-90 minutes for each of these eating periods. Some days I skip a solid food meal so he can spend more time on the floor playing or in his gait trainer. He also barely actually eats any of this solid food. He gags a lot and spits most of it out. I usually give him a sippy cup of half and half or fortified formula to go with. That's where most of the fat and cals come from. Anyway, I have a checkup with his pediatrician on Monday and I was going to ask her about revisiting the g tube, maybe doing a swallow study too. I think if he had more meat on his bones he might start meeting some of his milestones. He's 16 months and can sit up unassisted as long as I sit him up and it's only for short periods, depends on what he's doing. He hasn't any teeth yet either and doesn't crawl. He rolls to get around. He has cp on his right side and hearing loss. > > > > > > > > > > > > Also, everyone is always asking me if he points to things he wants, which he doesn't. Do your kids point? When did they start pointing? Just had a speech eval which brought up a thousand questions I hadn't even thought of. So now I'm obsessed with getting him to point. Seriously, why do we do these things to ourselves? > > > > > > > > > > > > Thanks for reading my rant. Having a special needs child can be so rewarding, but some days I just wanna rip out all of my hair. I guess that's true of all children because somedays I'd like the gypsies to take my " normal " and talkative 8 yr old. :-) > > > > > > > > > > > > Peace and love to you all. > > > > > > > > > > > > Kim > > > > > > > > > > > > “I am learning all the time. The tombstone will be my diploma.†> > > > > > — Eartha Kitt > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2012 Report Share Posted March 6, 2012 Yay!! Whoot whoot! That's great news!! ~Jodi mom to emmalee > Thanks everyone for the wonderful words of kindness and wisdom!!! I actually had a pleasant surprise at his doctors last week. He is now in the 2nd percentile for weight. I was in shock and overjoyed. He must be getting more to eat with his solids than I thought. I was sweating that appointment and thought for sure I was gonna be leaving with a referral to the gi docs. I coulda kissed my doc when she said he's in the 2nd percentile. > > “I am learning all the time. The tombstone will be my diploma.†> — Eartha Kitt > > > > > Hi Kim, > > > > I am way late to this conversation, but wanted to add a pro-tube post. I > > did everything possible to avoid the feeding tube route early last year > > after Callie dropped off the growth charts and was diagnosed as Failure to > > Thrive, but I just could not get her to take in enough calories and many > > nights I remember being in tears after adding up her calories for the day > > and seeing how far short she was falling. We agreed to an NG tube and > > Callie immediately began thriving. She gained over a pound in the first > > few weeks and her development really took off. It took away so much > > stress... I went to bed every night knowing she received the perfect number > > of calories and nutrition. She was then diagnosed with EoE (eosinophilic > > esophagitis caused by food allergies) and we realized we needed a feeding > > tube for a longer period of time. The NG is not a long term solution, so > > we switched to a G-tube. Even though I was sad about taking this step that > > involved surgery, it has been the best thing for her. It is much better > > than the NG and is very easy. Any time she gets sick I can easily > > administer meds and keep her hydrated. It has been a wonderful thing for > > us. She has gained 8 pounds since last March! It will be good when we can > > eventually get rid of it, but we first have to work through figuring out > > exactly what she is allergic to and she has to learn how to better eat > > solids... we are still on purees. Her bilateral perisylvian PMG makes oral > > motor skills a challenge. Her biggest delays are with speech & feeding at > > this point. > > > > Good luck with your decision. I just wanted to encourage you not to fear > > getting a tube. It can be a good thing. > > > > Best, > > > > Callie's Mommy > > http://calliebloggie.blogspot.com/ > > > > > > On Fri, Feb 24, 2012 at 10:32 PM, Kim Throgmartin wrote: > > > >> ** > >> > >> > >> I have just about had it with trying to feed my son. It's this constant > >> daily battle. It's soooooo frustrating. My husband has always been weird > >> about the g-tube because I think he views it as us giving up and taking the > >> " easy route " . I don't think he'd ever admit to that. He also rarely feeds > >> our son, which is fine, not complaining about that. Just don't think he > >> always understands how frustrating it is. > >> > >> Anyway, Just wanting to know how your kids came to have a gtube, for those > >> children that do. My son is not on the charts weight wise and never has > >> been (height wise he tops them). His eating seemed to be getting better, > >> but now it seems like he's eating less and less. He still drinks infant > >> formula fortified to a million calories. I also give him solid foods > >> two-three times a day. It takes 30-90 minutes for each of these eating > >> periods. Some days I skip a solid food meal so he can spend more time on > >> the floor playing or in his gait trainer. He also barely actually eats any > >> of this solid food. He gags a lot and spits most of it out. I usually give > >> him a sippy cup of half and half or fortified formula to go with. That's > >> where most of the fat and cals come from. Anyway, I have a checkup with his > >> pediatrician on Monday and I was going to ask her about revisiting the g > >> tube, maybe doing a swallow study too. I think if he had more meat on his > >> bones he might start meeting some of his milestones. He's 16 months and can > >> sit up unassisted as long as I sit him up and it's only for short periods, > >> depends on what he's doing. He hasn't any teeth yet either and doesn't > >> crawl. He rolls to get around. He has cp on his right side and hearing > >> loss. > >> > >> Also, everyone is always asking me if he points to things he wants, which > >> he doesn't. Do your kids point? When did they start pointing? Just had a > >> speech eval which brought up a thousand questions I hadn't even thought of. > >> So now I'm obsessed with getting him to point. Seriously, why do we do > >> these things to ourselves? > >> > >> Thanks for reading my rant. Having a special needs child can be so > >> rewarding, but some days I just wanna rip out all of my hair. I guess > >> that's true of all children because somedays I'd like the gypsies to take > >> my " normal " and talkative 8 yr old. :-) > >> > >> Peace and love to you all. > >> > >> Kim > >> > >> �I am learning all the time. The tombstone will be my diploma.� > >> � Eartha Kitt > >> > >> > >> > > > > > > Quote Link to comment Share on other sites More sharing options...
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