Got a couple of videos of the boy eating. The first 2 links are really one feeding session from last saturday the 5th that I sent to an OT for evaluation. The next is from this sunday the 13th after spending Mon, Tues, and Wed at KCRC and cutting back the tube feeds. Apparently I dress my kid in the same stuff all the time. In the first feeding session, he probably consumed one to two tablespoons of food total. In the second he ate an ounce of veggies, and ounce of mac and cheese, and some Funyuns (hmmm, not sure how they spell that) in less time than it takes to finish an entire tube feed!
Last week:
http://www.youtube.com/watch?v=u3Blynjb5eU
http://www.youtube.com/watch?v=rYNNacV9wCo
And now:
http://www.youtube.com/watch?v=XoT6IYJAS3k
And yes. He needs a haircut. Badly.
Sunday, March 13, 2011
Thursday, March 10, 2011
Big breakthrough!
Yep. Haven't said that in a while! So we're back from just 3 days at KCRC and I have to tell you, I wasn't expecting much. I was terribly frustrated at home this past month and was actually ready to start looking for different places to go. Really, I knew I was possibly overreacting (what?!) as I had all these thoughts running through my head and hadn't actually had a chance to speak to Polly yet. But it was keeping me up all night every night, which honestly I (or James) don't need any help with. But I was pleasantly surprised. WAY pleasantly surprised.
We showed up Monday morning, and just walking to Polly's room, which is attached to the cafeteria (handy), I blurted out in loud and rapid Langmade form all my concerns, the different places we were thinking of going, and everything I was freaked out about, whilst waddling with a gigantic pregnant belly. Hey, if anyone can get away with it, I can. People ooze sympathy around me! ;) Aaaaaanyway, Polly was great. Of course she was. She's been doing this for over 20 years and designed the entire program for UVA. People come from all over the country. Honestly, she does know what she's doing. I guess my biggest fear was that because she has a certain way of doing things that have been successful, that she might not be super open minded. But she did address every concern I had, came up with a plan very quickly, implemented it, and damnit all Helen Anne if it didn't work!
So here's what we are doing for the next month with close monitoring on James' weight:
He will get breakfast and dinner with a tube feed, but his other 2 to 3 snacks plus lunch will have no tube feeds. We have a couple of forks running at the same time loaded with food that he can choose from plus obviously forking things himself. We have to encourage lots of fluids and sometimes have to give just some water thru his tube at the end of the day. The hunger really does motivate him to chew. He hasn't gagged once and I can actually see food getting chewed up. And who wuda thought the highlight of my day would be seeing ABC food?! Used to to ally gross me out in elementary school...
What he eats:
Broccoli, cheese, bologna, other sandwich meats, fish, cereal, muffins, bread, carrots, pasta, beans, hot dogs, crackers, chex mix, fruit loops....offhand I can't think of anything else, but you get the picture. Now, he's eaten all of this at one point (except bologna---as I've never eaten it before, I had no idea it was a texture I should try--he loves it. Weird.), but never in any volume. At his last lunch he ate an entire slice of Kraft cheese, 1/2 slice bologna, a mini muffin, a tablespoon of avocado, and hull-less popcorn puffs. Crazy. I still have to coach him through it, but he's very willing, asks for more, and we don't need to distract him with Mickey just to get him to eat. He's starting to recognize hunger too! Yesterday in his last session at Kluge he didn't eat much. Just wasn't super hungry. So I put him in the car to hike home. After 15 min, I was going crazy with him flipping out about some toy that was 'broken' that wasn't broken and I was getting ready to throw it or myself out the window, when I realized he was hungry. Now this seems like something most parents of an almost 3 yr old would know, but I don't! He has never before shown a sign of hunger that I could do anything about. But we pulled over at a Starbucks so I could get my much craved hot chocolate, pulled out our new fav mini muffins by Entenmanns (50 cal for a teeny tiny muffin and they are moist and tasty- although I'm totally never allowed to eat one, or four). He ate 2 1/2 muffins and halfway through he told me that it made him feel all better and made his crying all better. I almost cried in Starbucks, like they didn't think I was weird enough!
The other thing I asked for help with was my own education on how to feed a kid. I've never done it. I have no idea how to feed a kid normally or how much to expect them to eat and feel good about it. Most parents don't chart how many milliliters and calories their kid intakes every day. Part of healthy eating is learning to pay attention to your body's signals for thirst and hunger, and that's clearly so important for kids to learn from the very beginning. But as parents, we train our kids for that slowly, and we learn how to do it on the fly. Most of you have never thought of it before, but of course, everything we do affects their future somehow, and just serving meals is one of those things. So we decided that we need to slowly 'demedicalize' our family. I thought it was a good term. It'll happen slowly, as we do still need to chart calories and fluids and weight, but it doesn't need to consume us forever. That's a really hard thing to do! But for now, the tube weaning is a big undertaking that does require vigilance and perseverance and now that we've started, we're not turning back. I say this so that my friends out there who might be wanting to get together outside my house for playdates or fun get-togethers...or who might possibly have given up altogether, well, I'm still not leaving. Lol. Because I'm tired and done-for, yes, but also because we (especially James) have so much riding on the next few months and the consistency of therapy in-home and at doctor's offices to successfully wean him from the tube directly into independent and functional feeding. I actually just read an article on oral and tube feeding on www.new-vis.com that said the first thing to be sure of when you begin a tube wean is the parents readiness to take on the commitment, and if they are not quite ready for whatever reason, that is okay and it's best to delay a little until all the pieces are in place. But we're really ready. Really.
So obviously these are amazing breakthroughs. We're certainly not done yet, but where most kids his age have had almost 3 years learning to eat, James has had about 6 months of food learning, preferred by 18 months of just tolerating food near him. He's a pretty miraculous kid to maintain his good humor through all this. Plus Tom just told me that when our kids are grown, I should never feel guilty or ashamed if I decide to do nothing at all. Ever. I totally plan to take him up on that. It's gonna be awesome!
We showed up Monday morning, and just walking to Polly's room, which is attached to the cafeteria (handy), I blurted out in loud and rapid Langmade form all my concerns, the different places we were thinking of going, and everything I was freaked out about, whilst waddling with a gigantic pregnant belly. Hey, if anyone can get away with it, I can. People ooze sympathy around me! ;) Aaaaaanyway, Polly was great. Of course she was. She's been doing this for over 20 years and designed the entire program for UVA. People come from all over the country. Honestly, she does know what she's doing. I guess my biggest fear was that because she has a certain way of doing things that have been successful, that she might not be super open minded. But she did address every concern I had, came up with a plan very quickly, implemented it, and damnit all Helen Anne if it didn't work!
So here's what we are doing for the next month with close monitoring on James' weight:
He will get breakfast and dinner with a tube feed, but his other 2 to 3 snacks plus lunch will have no tube feeds. We have a couple of forks running at the same time loaded with food that he can choose from plus obviously forking things himself. We have to encourage lots of fluids and sometimes have to give just some water thru his tube at the end of the day. The hunger really does motivate him to chew. He hasn't gagged once and I can actually see food getting chewed up. And who wuda thought the highlight of my day would be seeing ABC food?! Used to to ally gross me out in elementary school...
What he eats:
Broccoli, cheese, bologna, other sandwich meats, fish, cereal, muffins, bread, carrots, pasta, beans, hot dogs, crackers, chex mix, fruit loops....offhand I can't think of anything else, but you get the picture. Now, he's eaten all of this at one point (except bologna---as I've never eaten it before, I had no idea it was a texture I should try--he loves it. Weird.), but never in any volume. At his last lunch he ate an entire slice of Kraft cheese, 1/2 slice bologna, a mini muffin, a tablespoon of avocado, and hull-less popcorn puffs. Crazy. I still have to coach him through it, but he's very willing, asks for more, and we don't need to distract him with Mickey just to get him to eat. He's starting to recognize hunger too! Yesterday in his last session at Kluge he didn't eat much. Just wasn't super hungry. So I put him in the car to hike home. After 15 min, I was going crazy with him flipping out about some toy that was 'broken' that wasn't broken and I was getting ready to throw it or myself out the window, when I realized he was hungry. Now this seems like something most parents of an almost 3 yr old would know, but I don't! He has never before shown a sign of hunger that I could do anything about. But we pulled over at a Starbucks so I could get my much craved hot chocolate, pulled out our new fav mini muffins by Entenmanns (50 cal for a teeny tiny muffin and they are moist and tasty- although I'm totally never allowed to eat one, or four). He ate 2 1/2 muffins and halfway through he told me that it made him feel all better and made his crying all better. I almost cried in Starbucks, like they didn't think I was weird enough!
The other thing I asked for help with was my own education on how to feed a kid. I've never done it. I have no idea how to feed a kid normally or how much to expect them to eat and feel good about it. Most parents don't chart how many milliliters and calories their kid intakes every day. Part of healthy eating is learning to pay attention to your body's signals for thirst and hunger, and that's clearly so important for kids to learn from the very beginning. But as parents, we train our kids for that slowly, and we learn how to do it on the fly. Most of you have never thought of it before, but of course, everything we do affects their future somehow, and just serving meals is one of those things. So we decided that we need to slowly 'demedicalize' our family. I thought it was a good term. It'll happen slowly, as we do still need to chart calories and fluids and weight, but it doesn't need to consume us forever. That's a really hard thing to do! But for now, the tube weaning is a big undertaking that does require vigilance and perseverance and now that we've started, we're not turning back. I say this so that my friends out there who might be wanting to get together outside my house for playdates or fun get-togethers...or who might possibly have given up altogether, well, I'm still not leaving. Lol. Because I'm tired and done-for, yes, but also because we (especially James) have so much riding on the next few months and the consistency of therapy in-home and at doctor's offices to successfully wean him from the tube directly into independent and functional feeding. I actually just read an article on oral and tube feeding on www.new-vis.com that said the first thing to be sure of when you begin a tube wean is the parents readiness to take on the commitment, and if they are not quite ready for whatever reason, that is okay and it's best to delay a little until all the pieces are in place. But we're really ready. Really.
So obviously these are amazing breakthroughs. We're certainly not done yet, but where most kids his age have had almost 3 years learning to eat, James has had about 6 months of food learning, preferred by 18 months of just tolerating food near him. He's a pretty miraculous kid to maintain his good humor through all this. Plus Tom just told me that when our kids are grown, I should never feel guilty or ashamed if I decide to do nothing at all. Ever. I totally plan to take him up on that. It's gonna be awesome!
Thursday, March 3, 2011
Next step
Wanted to do a quick update since we met with the OT last week. Denise was great to come out and evaluate James and our house to set up a program for the next month. I think she was particularly fond of the dog bed that James sleeps (sort of) on. The key for the next few weeks is to work on building strength and getting more input into his hands. So we have a big obstacle course set up downstairs that is pretty fun, I have to say. We do wheelbarrow walking everywhere and lots of weight-bearing activities on his arms. It's amazing to see how tired it makes him but he has a great time. We have also gone back to the brushing protocol which I do think helps. It is just yet another step in our day before each feeding but does seem to calm him down a bit, once you wrastle him into it anyway.
I've been concerned about James' sleep pretty much from birth. :) But while it has gotten a little bit better, nothing seems to help. And I have asked everyone. We've tried all sorts of calming techniques but he still wakes up screaming and is restless, and then so tired during the day. He is tired at night, but just can't physically soothe himself or stay asleep. Now, I have been taking him to KCRC for almost a year now and each time his sleep is discussed and never really addressed. They've given me the same ideas everyone else has, so I figured we would just have to deal it with as time goes on and he gets older. Now I find out they have a whole sleep study center there! Really?! No one thought that might be helpful knowledge? Lol. Okay, I should have done more research, but still. So anyway, we will try to get a consult when we are there next week and hopefully a sleep study done. It could turn out to be nothing, but we've gone through every other sort of frequently awful testing to rule out different disorders, so why not a relatively simple look-see into what's going on overnight before I lose my marbles? Just a thought.
But I'm really looking forward to next week at Kluge as I've been increasing frustrated with the lack of progress at home. But I really think that can be contributed to the fact that James is ready for more 'detail' work that I am not knowledgeable enough to undertake without help (my business major was clearly a mistake---who knew?). So we'll see what they come up with to deal with me...er, James...and go from there. But I can promise that if I'm not satisfied with the answers, i'll keep scouring the Internet for new ideas or doctors or diagnosis that our current doctors love when I conjure up (whatever, I'm totally right 95% of the time).
Right now my main concern is that when we go stay at Ali's beautiful farm in Charlottesville, I'll have to explain that the kitty is STILL in Florida, unless Mama Kitty can make the flight on the private jet real quick.....
I've been concerned about James' sleep pretty much from birth. :) But while it has gotten a little bit better, nothing seems to help. And I have asked everyone. We've tried all sorts of calming techniques but he still wakes up screaming and is restless, and then so tired during the day. He is tired at night, but just can't physically soothe himself or stay asleep. Now, I have been taking him to KCRC for almost a year now and each time his sleep is discussed and never really addressed. They've given me the same ideas everyone else has, so I figured we would just have to deal it with as time goes on and he gets older. Now I find out they have a whole sleep study center there! Really?! No one thought that might be helpful knowledge? Lol. Okay, I should have done more research, but still. So anyway, we will try to get a consult when we are there next week and hopefully a sleep study done. It could turn out to be nothing, but we've gone through every other sort of frequently awful testing to rule out different disorders, so why not a relatively simple look-see into what's going on overnight before I lose my marbles? Just a thought.
But I'm really looking forward to next week at Kluge as I've been increasing frustrated with the lack of progress at home. But I really think that can be contributed to the fact that James is ready for more 'detail' work that I am not knowledgeable enough to undertake without help (my business major was clearly a mistake---who knew?). So we'll see what they come up with to deal with me...er, James...and go from there. But I can promise that if I'm not satisfied with the answers, i'll keep scouring the Internet for new ideas or doctors or diagnosis that our current doctors love when I conjure up (whatever, I'm totally right 95% of the time).
Right now my main concern is that when we go stay at Ali's beautiful farm in Charlottesville, I'll have to explain that the kitty is STILL in Florida, unless Mama Kitty can make the flight on the private jet real quick.....
Wednesday, February 23, 2011
Sometimes no news isn't good news, it's just no news.
I'd love to be able to post that James has made incredible strides and we're ready to wean from the tube in March like we'd hoped. Well, he has made incredible strides, but, you know, over the last year. We had a really good plan for the past couple of months, but now we're sort of treading water. I felt we needed to increase James' tube feeds again so he could gain some weight and recover from winter colds and travel. Plus, whle he is eating more than ever, he is just starting to transition to realish food, which doesn't have as many calories as puurees and certainly formula. I plan on reducing his tubes again as soon as I feel he's chubbed up a little. The downside of increasing the tube is that he is not as interested in the food, which makes developing his skills more difficult. It's always a little give and take. But I don't feel we can stop using the tube until he has the necessary skills and is feeding himself. Got a ways to go for that. We still have issues with gagging and not chewing effectively. We seems to have a hard time sensing and then manipulating the food in his mouth. That's, obviously, where the sensory stuff comes into play. We are working on a new plan with an OT at our house (i've convinced her to drive an hour and a half so she can work with James at home and see how he really is---and by convinced I mean pleaded, guilted, and promised to pay anything), and possibly shorter and more frequent trips to Kluge, as well as a possible Dallas trip to see Jenny.
For a while I felt an urgency to get him sleeping properly and eating before the new baby (who is a GIRL!!) arrives. But as I've been trained so well over the past couple of years, I've let that balloon go. I really don't give a shit. :) I don't care who sleeps where as long as they sleep and I don't care when James starts eating as long as he does! Sorry to say that this little princess will not have a little pink nursery set up. She'll sleep where she needs to and we'll go from there, day by day. But I do promise we'll have lots of other pink stuff. See? Low expectations...er...no expectations.
We had a wonderful trip out to CA recently to see family and go to my beautiful cousin's bridal shower, since we likely won't make the wedding in July with the new baby coming in June. It was great to play with cousins (James' and mine!) and see sunshine and warmth! For months James didn't want to play outside. I was actually getting a little worried until I realized that maybe he's just kinda reasonable. Who wants to go out in 16 degree weather. Ever? So the week of daily 75 degrees really helped us out. Coming home to 46 degrees was awesome too. So James once again loves the outdoors which means I can huff and puff my ass around all our hills pushing the stroller so working off this baby weight later isn't such a huge shock. Also, having a little color on your chipmunk cheeks and double chin really does make it look better. Really.
I'll continue to post more as I know more! Until then, keep us in your prayers. We need all the help we can get!!
For a while I felt an urgency to get him sleeping properly and eating before the new baby (who is a GIRL!!) arrives. But as I've been trained so well over the past couple of years, I've let that balloon go. I really don't give a shit. :) I don't care who sleeps where as long as they sleep and I don't care when James starts eating as long as he does! Sorry to say that this little princess will not have a little pink nursery set up. She'll sleep where she needs to and we'll go from there, day by day. But I do promise we'll have lots of other pink stuff. See? Low expectations...er...no expectations.
We had a wonderful trip out to CA recently to see family and go to my beautiful cousin's bridal shower, since we likely won't make the wedding in July with the new baby coming in June. It was great to play with cousins (James' and mine!) and see sunshine and warmth! For months James didn't want to play outside. I was actually getting a little worried until I realized that maybe he's just kinda reasonable. Who wants to go out in 16 degree weather. Ever? So the week of daily 75 degrees really helped us out. Coming home to 46 degrees was awesome too. So James once again loves the outdoors which means I can huff and puff my ass around all our hills pushing the stroller so working off this baby weight later isn't such a huge shock. Also, having a little color on your chipmunk cheeks and double chin really does make it look better. Really.
I'll continue to post more as I know more! Until then, keep us in your prayers. We need all the help we can get!!
Tuesday, February 1, 2011
He likes some stuff!!
People frequently ask me if there's a food James really likes. I have to say, I've never felt particularly charitable answering this question over the past two years. I mean, the answer was no. Cause if he liked something, he would freaking eat it, right? And until 6 months ago, he ate absolutely nothing. Then he started eating some yogurt and we've progressed from there. But I can't say he liked yogurt. He ate it because I asked him to and fed it to him. He tolerated it. Still does really. But it's like my sister says: they're not potty trained if they can't do it all by themselves. He may eat some food now, and it's wonderful and heading in the right direction, but he doesn't actually do it himself, so it's really just a replacement of the tube. But finally, FINALLY, there are 5 things he will ask for repeats of. Shredded cheese, Cheezit Gripz (they are pretty tasty), toast (go figure), ketchup, and broccoli. The kid loves broccoli. I mean, I love broccoli, for for some reason I think it's way weird how he likes it. Says it's salty and bumpy. Wonder how he'll feel about it someday when he finds out it doesn't usually come drenched in olive oil or butter?
Thursday, January 20, 2011
More updates
I feel like I'm always having to do big group updates! But I guess that's exactly what I'm doing, so that's normal. Things have been good with James. Some days am so encouraged and some days I burst into tears at church after he's vomited everywhere. We're a work in progress, what can I say. When I look back on 2010, clearly we have a lot to be thankful for.
Last year at this time James weighed about 19 lbs. Today he weighs over 25 lbs. Last year he only drank a bottle and only when he was sleeping. Now he won't touch a bottle but eats: cheetos, cheese, yogurt, fish sticks, French fries, juice, ketchup, cookies, oatmeal, pasta. Not too shabby. Now, before I get a bunch of disgustingly optimistic phones calls, it takes 30 min to eat 5 cheetos, he can maybe eat 2 fries plus half a fish stick in that same time, he drinks 1 to 2 ounces of juice per day, I have to spoon feed him anything spoonfeedable and have to monitor the whole process each time to make sure he continues to eat, chew, swallow, etc. Still, such huge steps. It truly takes all of my time, if any of my friends wonder why I rarely go anywhere. He has 5 feedings per day, which consist of a tube feed during a small oral meal. Each meal lasts about 30 min, not including setup and cleanup time. So we have breakfast first thing, then we run around for an hour and a half and play and try to get him to digest well, then we have a snack, same run around time (while attempting to do normal housework as well), lunch, nap, wake up and run around for 30 min, snack, run around, bath, dinner, bed. So it becomes difficult to drive any length of time to fit in the feedings properly. Basically when we decide to go anywhere, I sort of consider that day a wash. Especially considering that we live a little far from...well, stuff to do with kids. We have discovered an awesome indoor kids pool about 30 min away and have been having lots of fun when not battling colds!
We had an awesome Thanksgiving with my family and Tom's mom here. It was so nice to see James be able to play with the big boys and keep up, rather than being sick! It helps that my nephews could not be any nicer to him. They are some of the best boys ever!!
We spent 2 weeks in Dallas over Christmas, since we haven't been making our monthly therapy trips anymore. We got to see James' Dallas therapist one night and it was so wonderful to catch up. She continues to be so helpful with tips and suggestions and a friendly ear. We will be heading back to KCRC in March for a few days and hope to jump forward with more progress. I'm still really hoping to have James self feeding by June, but who knows. I don't think we'll still be using the tube then, but I'm not sure how quickly we can develop the skills that are instinctual for most kids, and that they've also been working on since birth. It's a whole other ball o' wax to start learning when you're 2.
That's pretty much my year's recap! I will continue to update as things happen. We are really just staying the course right now, so there's no major, big announcements, which I consider a very good thing!! In the meantime, James is very happy, healthy, and doing/saying new things every day. It's hilarious and we are loving every minute!
Last year at this time James weighed about 19 lbs. Today he weighs over 25 lbs. Last year he only drank a bottle and only when he was sleeping. Now he won't touch a bottle but eats: cheetos, cheese, yogurt, fish sticks, French fries, juice, ketchup, cookies, oatmeal, pasta. Not too shabby. Now, before I get a bunch of disgustingly optimistic phones calls, it takes 30 min to eat 5 cheetos, he can maybe eat 2 fries plus half a fish stick in that same time, he drinks 1 to 2 ounces of juice per day, I have to spoon feed him anything spoonfeedable and have to monitor the whole process each time to make sure he continues to eat, chew, swallow, etc. Still, such huge steps. It truly takes all of my time, if any of my friends wonder why I rarely go anywhere. He has 5 feedings per day, which consist of a tube feed during a small oral meal. Each meal lasts about 30 min, not including setup and cleanup time. So we have breakfast first thing, then we run around for an hour and a half and play and try to get him to digest well, then we have a snack, same run around time (while attempting to do normal housework as well), lunch, nap, wake up and run around for 30 min, snack, run around, bath, dinner, bed. So it becomes difficult to drive any length of time to fit in the feedings properly. Basically when we decide to go anywhere, I sort of consider that day a wash. Especially considering that we live a little far from...well, stuff to do with kids. We have discovered an awesome indoor kids pool about 30 min away and have been having lots of fun when not battling colds!
We had an awesome Thanksgiving with my family and Tom's mom here. It was so nice to see James be able to play with the big boys and keep up, rather than being sick! It helps that my nephews could not be any nicer to him. They are some of the best boys ever!!
We spent 2 weeks in Dallas over Christmas, since we haven't been making our monthly therapy trips anymore. We got to see James' Dallas therapist one night and it was so wonderful to catch up. She continues to be so helpful with tips and suggestions and a friendly ear. We will be heading back to KCRC in March for a few days and hope to jump forward with more progress. I'm still really hoping to have James self feeding by June, but who knows. I don't think we'll still be using the tube then, but I'm not sure how quickly we can develop the skills that are instinctual for most kids, and that they've also been working on since birth. It's a whole other ball o' wax to start learning when you're 2.
That's pretty much my year's recap! I will continue to update as things happen. We are really just staying the course right now, so there's no major, big announcements, which I consider a very good thing!! In the meantime, James is very happy, healthy, and doing/saying new things every day. It's hilarious and we are loving every minute!
Friday, December 3, 2010
Progress Report
Hello all! Wanted to update on our latest week of therapy. It's no secret I wasn't super excited to go the week before 10 people would be staying at my house for Thanksgiving, but of course I'm glad we went! I have to start by saying how fortunate we are to live so close to this facility. The other 'feeding family' there was from Chicago and had to make the most of their 2 weeks before going home. We actually just had 4 days of therapy and will do that again in March. Otherwise Polly is booked until next July. Well I'm having a baby in June, so there's no way I'm waiting to get this kid eating! We hope to start really weaning him from the tube in March.
So our big issues coming into therapy this time was bite sizes (miniscule) and getting him to chew soft food instead of just letting it dissolve or trying top swallow it wole and gagging. First, after noting his weight is soooo good (for the first time ever), we cut down on his tube feeds almost by half. Then pretty much Polly asked him to open his mouth bigger and he just did. Honestly, I'd given up at home. If he took one open mouthed bite of something, I was pretty darn happy for the whole day. Now, he can finish 4 ounces of yogurt in about 20 min. This has actually changed our lives. There is a big difference between 20 min 6x a day, and 45 min 6x a day. Especially when in those 45 min, you're lucky to get an ounce of anything in him.
Then we started work with getting him to take the food in his mouth and move it to his molars to crunch it. You could really see how incredibly hard it was for him to do, but it continues to get easier every day. I really have to coach him through every step. Sometimes I'm staring at him so hard he starts to laugh. Woops! Lol
Crunchy stuff is much easier for him to chew, or anything that makes a sound. But its all about how you approach him. I think training horses has given me pretty good insight in dealing with this (thanks mom and dad). With horses you have to figure out how to get them to do something in a way they understand and also so they can be rewarded in a way they appreciate it. Pretty similar to kids. I got James to chew fruit snacks by getting him interested in how it was sticky on his teeth. Then I finally (finally) got him to stop swallowing whole pieces of pasta, avocado, banana, etc (slippery things), by asking him to spit it out first. I think he. Wasn't sure how to manipulate those sorts of things in his mouth. Course, its still hit or miss. Today he gagged on banana and puked all over. But he did come back and eat more and chew it a little more carefully. Smart kid.
So everything was very successful and encouraging. We came home to a ridiculously fun and wild Thanksgiving where, yet again, I miss out on all the good wine. Psht. Shoulda planned this better. James is napping better and sort of sleeping better. Since changing out the button he is not in so much discomfort, but he still wakes up several times a night. I figure I'll deal with it more after Christmas. One thing at a time. Or, rather, 180 things at a time, but I'm at 180, so sleep will just have to wait. :)
So our big issues coming into therapy this time was bite sizes (miniscule) and getting him to chew soft food instead of just letting it dissolve or trying top swallow it wole and gagging. First, after noting his weight is soooo good (for the first time ever), we cut down on his tube feeds almost by half. Then pretty much Polly asked him to open his mouth bigger and he just did. Honestly, I'd given up at home. If he took one open mouthed bite of something, I was pretty darn happy for the whole day. Now, he can finish 4 ounces of yogurt in about 20 min. This has actually changed our lives. There is a big difference between 20 min 6x a day, and 45 min 6x a day. Especially when in those 45 min, you're lucky to get an ounce of anything in him.
Then we started work with getting him to take the food in his mouth and move it to his molars to crunch it. You could really see how incredibly hard it was for him to do, but it continues to get easier every day. I really have to coach him through every step. Sometimes I'm staring at him so hard he starts to laugh. Woops! Lol
Crunchy stuff is much easier for him to chew, or anything that makes a sound. But its all about how you approach him. I think training horses has given me pretty good insight in dealing with this (thanks mom and dad). With horses you have to figure out how to get them to do something in a way they understand and also so they can be rewarded in a way they appreciate it. Pretty similar to kids. I got James to chew fruit snacks by getting him interested in how it was sticky on his teeth. Then I finally (finally) got him to stop swallowing whole pieces of pasta, avocado, banana, etc (slippery things), by asking him to spit it out first. I think he. Wasn't sure how to manipulate those sorts of things in his mouth. Course, its still hit or miss. Today he gagged on banana and puked all over. But he did come back and eat more and chew it a little more carefully. Smart kid.
So everything was very successful and encouraging. We came home to a ridiculously fun and wild Thanksgiving where, yet again, I miss out on all the good wine. Psht. Shoulda planned this better. James is napping better and sort of sleeping better. Since changing out the button he is not in so much discomfort, but he still wakes up several times a night. I figure I'll deal with it more after Christmas. One thing at a time. Or, rather, 180 things at a time, but I'm at 180, so sleep will just have to wait. :)
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