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.....
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