Monday night, for Family Home Evening, we decided to have a movie night, complete with popcorn and candy. Usually Ben doesn't want dessert or anything yummy to eat after he has eaten dinner, so I didn't think he would be interested in the treats. We popped the popcorn, and it smelled wonderful, and he could not resist the tempting aroma. He asked to try the popcorn. Geoff and I thought about it, and were hesitant, because we were not sure we wanted to introduce corn in its original form, but Ben would not be denied. He ate it and liked it. Ben is a bit different from other kids, however, in that he does not indulge in food that he thinks he likes. He ate a few kernels and was content. We are hoping that eosinophilic esophagitis is just a bad memory now, and that he will not have an outbreak because of this popcorn. He has done very well with the processed corn products...so here's hoping.
To add to this, he ate corn chips and salsa tonight. I guess he saw us all enjoying, and felt he needed some too. EE typically takes 5-7 days to develop and to cause symptoms to be felt. Yikes! We are a bit nervous.
Wednesday, January 19, 2011
Thursday, November 18, 2010
I Am Not a Corn Nazi Anymore!
In May, Ben's gastroenterologist recommended that we have Ben retested for his corn allergy. It took me a while to process that idea, but I eventually came around to it. The thing that put me over the edge occurred last month when Ben had a fever, and I could not give him medicine for it. I have some compounded Tylenol that expired last year, but it still works...if you can get Ben to take it. It does have flavoring added, but I am pretty sure nothing can help make it palatable. If you are wondering what it tastes like, grab a Tylenol tablet and chew it up. Yes, it is that good. There is not a drug available that is corn free. Since Ben has never had another incident of eosinophilic esophagitis, and we know of a few instances in which he had been exposed to corn, we were thinking he had outgrown a nasty allergy.
Last week we took Ben in to his allergist. He repeated the "patch test" for corn, a process which involved three different trips to Mesa...Ugh! To do the patch test, a small amount of organic corn meal is placed on a small disk, and it is taped to the back with hypo-allergenic tape. It is left in place for 48 hours, then removed. Back in 2006, his reaction was so severe that when his patch was removed, blood immediately came pouring out of his back. The corn had literally eaten his skin off. So as this patch was pulled, Geoff and I were holding our breath. When we saw his back this time, we were amazed and so relieved! There wasn't even a red mark. Nothing! Ben had outgrown his corn allergy. Thank heavens!
Ben's doctor suggested that we allow Ben to have corn-based fillers in food, like corn starch, corn syrup, food starch, dextrose, etc. He told us to hold off on cornmeal, or corn kernels for a month. Seriously, I don't care if he never eats those things, but it is such an awesome thing to be able to give him other foods. That really simplifies things for us. It is such a relief to not have to worry about every little thing that goes into his mouth, not that he wants to put anything into his mouth at all.
He is doing well in school. Every once in a while he has a bad behavior day, but so do a lot of kids his age. He is catching on quickly to the things he is taught, and I really like his teacher. She is so perfect for him. He is also doing well with his lunch plan that we came up with for him at school.
I am so thankful that we got him tested again, and that we had good results. I am looking forward to relaxing, and not having to worry about what goes into his mouth.
Last week we took Ben in to his allergist. He repeated the "patch test" for corn, a process which involved three different trips to Mesa...Ugh! To do the patch test, a small amount of organic corn meal is placed on a small disk, and it is taped to the back with hypo-allergenic tape. It is left in place for 48 hours, then removed. Back in 2006, his reaction was so severe that when his patch was removed, blood immediately came pouring out of his back. The corn had literally eaten his skin off. So as this patch was pulled, Geoff and I were holding our breath. When we saw his back this time, we were amazed and so relieved! There wasn't even a red mark. Nothing! Ben had outgrown his corn allergy. Thank heavens!
Ben's doctor suggested that we allow Ben to have corn-based fillers in food, like corn starch, corn syrup, food starch, dextrose, etc. He told us to hold off on cornmeal, or corn kernels for a month. Seriously, I don't care if he never eats those things, but it is such an awesome thing to be able to give him other foods. That really simplifies things for us. It is such a relief to not have to worry about every little thing that goes into his mouth, not that he wants to put anything into his mouth at all.
He is doing well in school. Every once in a while he has a bad behavior day, but so do a lot of kids his age. He is catching on quickly to the things he is taught, and I really like his teacher. She is so perfect for him. He is also doing well with his lunch plan that we came up with for him at school.
I am so thankful that we got him tested again, and that we had good results. I am looking forward to relaxing, and not having to worry about what goes into his mouth.
Thursday, September 16, 2010
School is In!
Ben started kindergarten all day...finally! He loves it. I love it too! I met with the school's 504 plan team before last school year ended, and then again just before school started. I trained his aides for a couple of days when school began. His aides are doing the best they can, but because of the short time I had to train them, I have to help them along now and then. During training, I had to chuckle because his aides wanted to have conversation with him, and felt like they were being rude if they didn't talk. They even felt pity when I removed one of his smiley faces off of his board. I think their attitudes have probably changed a bit. Overall, I am happy with their efforts, and thankful for them.
Ben eats lunch each day in a little room in the nurse's office. He is pulled out of class about 30 minutes early so he will have enough time to eat. He was too distracted with the blinds in the window open, so those get closed. We did as much as we could to minimize distractions, and keep that room like the simple room at Kennedy-Krieger. He sits at a small table, and his aide sits on the opposite side and times him. If he earns level 2, he misses recess, and must sit on the wall. This is pure torture for him, as recess time is his favorite time to run, play, and socialize. I hear that he is the "crazy man" of the playground.
Ben did a great job eating for them for a couple of weeks, and then the honeymoon period wore off, and he let some of those true colors shine through. He has thrown up, acted up, and earned level 2 for them. I have to say, however, that I enjoy having a break, and having someone else deal with that situation, instead of me.
This morning I put a call into the clinic, because Ben has been holding food in his mouth, and not chewing. He is taking way too long to chew as well. He gets distracted and stares off, and does not remember to chew. It is irritating for us, and for the aides at school. It will be interesting to see what his behavioral psych has to say about it. Hopefully she will call soon.
With school starting, I am having a miserable time getting him to eat breakfast. He is not a breakfast person anyway, so our rushed schedule is tough stuff. I do not have time to use his program in the mornings. I have to make his lunch, as well as Dan's. I help my other kids get out the door, and have a few carpools that I am responsible for during the week before the school day begins. I know the clinic will ask about how each meal is going, and I will have to report that breakfast is dismal. I get him out of bed too early each morning. He is supposed to have only 45 minutes to eat, and it always takes him about 75 minutes. I try to endure mornings.
I really look forward to the day when he will eat on his own accord, but I am still grateful for the improvements and growth Ben has made.
Ben eats lunch each day in a little room in the nurse's office. He is pulled out of class about 30 minutes early so he will have enough time to eat. He was too distracted with the blinds in the window open, so those get closed. We did as much as we could to minimize distractions, and keep that room like the simple room at Kennedy-Krieger. He sits at a small table, and his aide sits on the opposite side and times him. If he earns level 2, he misses recess, and must sit on the wall. This is pure torture for him, as recess time is his favorite time to run, play, and socialize. I hear that he is the "crazy man" of the playground.
Ben did a great job eating for them for a couple of weeks, and then the honeymoon period wore off, and he let some of those true colors shine through. He has thrown up, acted up, and earned level 2 for them. I have to say, however, that I enjoy having a break, and having someone else deal with that situation, instead of me.
This morning I put a call into the clinic, because Ben has been holding food in his mouth, and not chewing. He is taking way too long to chew as well. He gets distracted and stares off, and does not remember to chew. It is irritating for us, and for the aides at school. It will be interesting to see what his behavioral psych has to say about it. Hopefully she will call soon.
With school starting, I am having a miserable time getting him to eat breakfast. He is not a breakfast person anyway, so our rushed schedule is tough stuff. I do not have time to use his program in the mornings. I have to make his lunch, as well as Dan's. I help my other kids get out the door, and have a few carpools that I am responsible for during the week before the school day begins. I know the clinic will ask about how each meal is going, and I will have to report that breakfast is dismal. I get him out of bed too early each morning. He is supposed to have only 45 minutes to eat, and it always takes him about 75 minutes. I try to endure mornings.
I really look forward to the day when he will eat on his own accord, but I am still grateful for the improvements and growth Ben has made.
Wednesday, August 04, 2010
Quick Update!
Summer has been so busy for us. On some days, I find it extremely challenging to make it out the door on time to appointments, and to still be able to time Ben's meals. Sometimes I just can't get to timing him. If I ask my kids to do it, they will occasionally attach strings of their own to his performance, and Ben has a fit, and the meal ends up in a sad, downward spiral. I find that mealtime is a major frustration for me.
I am going to be training a couple of people at Ben's school to handle his program at lunchtime. When I called this morning to set that up, the counselor said we would most likely have a meeting on Friday. Friday? Seriously? I trained for weeks in Baltimore to get the program right. School starts on Monday. They need to know how to handle it when he decides to throw up, refuse a bite, chuck his plate across the room, etc. They need to also know how to judge bite size. One does not simply pick that routine up in a half hour meeting. I am feeling very discouraged, and have many apprehensions. Our school district leaves much to be desired.
On a good note, however, KKI has continued to be supportive, and checks in with me regularly. They had told me that once you attend their program, you are family, and they are not kidding. They definately want their clients to be successful. We tweaked his program a bit to give him more success. He now gets 5 faces to complete his yogurt. So for 4 oz. of yogurt, he has 15 sec. allotted per bite, and if he does not take his bite in that time, he will lose a face. He is doing well with it. It is the solids that are giving him grief now and then. We may need to change that. He has been level 2 twice in the last couple of days.
I am going to be training a couple of people at Ben's school to handle his program at lunchtime. When I called this morning to set that up, the counselor said we would most likely have a meeting on Friday. Friday? Seriously? I trained for weeks in Baltimore to get the program right. School starts on Monday. They need to know how to handle it when he decides to throw up, refuse a bite, chuck his plate across the room, etc. They need to also know how to judge bite size. One does not simply pick that routine up in a half hour meeting. I am feeling very discouraged, and have many apprehensions. Our school district leaves much to be desired.
On a good note, however, KKI has continued to be supportive, and checks in with me regularly. They had told me that once you attend their program, you are family, and they are not kidding. They definately want their clients to be successful. We tweaked his program a bit to give him more success. He now gets 5 faces to complete his yogurt. So for 4 oz. of yogurt, he has 15 sec. allotted per bite, and if he does not take his bite in that time, he will lose a face. He is doing well with it. It is the solids that are giving him grief now and then. We may need to change that. He has been level 2 twice in the last couple of days.
Tuesday, July 13, 2010
Back 2 Baltimore, But 4 a Quick Visit
Ben had an appointment for a follow up on June 24th. We flew to Wash. DC, and arrived at 1am on the morning of the 23rd. My sweet sis sacrificed some shut-eye to pick us up, then later drove us to Baltimore, to the Ronald McDonald House. It was great to walk in to the House and to feel like I was home. What an amazing charity that is! I met up with some friends who were still there, and those were very happy reunions. We also timed our visit so that we could see Ben's best buddy who went through 7 weeks of the program with us. It was great to see them again, and we spent the evening chatting and hanging out with them.
On the 24th, we went to KKI. Ben had a feeding appointment at 12:30pm. We fixed his lunch and I fed it to him. The session was videotaped for analysis, and his therapist also sat with her laptop and took data during the meal. While we were in the program, I felt tremendous pressure to follow all of the rules and guidelines for feeding Ben, but now that we are out, and I have had two months to tweak and adapt his program at home, and I do not feel that same pressure. That is a relief for me. Ben, of course, in the simple cocoon of a feeding room, ate his meal perfectly. In reality, Ben eats in our kitchen, and loses focus everytime someone walks into the room, or makes a noise. Now that school is out, every meal is difficult for Ben to focus on, and to get through. I was a bit disappointed when his meal went flawlessly at KKI.
Ben had his clinic appointment at 2:00pm. At that appointment, we met with all of the members of his team. We saw the dietician, his OT, the nurse, pediatric GI, and his behavioral psych. His team thought he was doing very well, and the dietician noted that Ben had grown two inches since his evaluation in October. His weight has only increased by about a pound, but she thought his weight would increase after some of the height settled down. The team member that made the changes was the behavioral psych., and I like what we came up with.
We changed the way Ben earns Level 3. The problem is that he is getting very distracted, and that he is wasting time in the beginning of his meal, and running out of time in the end when he needs it most, on the food that is most difficult for him. Budgeting is an advanced skill. So, we are allowing him two chances on pureed food, and four chances on regular textured food. If he goes over the allotted time (15 sec. per bite of puree, and 45 sec. per bite of reg. texture) per bite, he will lose a face on his chart. We also cut down the time allotted for purees. He was formerly allowed 30 sec. for a bite of yogurt or pudding, and he was wasting all of it, which made me CRAZY. It is like he has a timer in his head. Obviously he does not need that much time for one bite of food like that. He is adjusting well to only 15 sec.
The other change is where we feed him. The kitchen is too central. Now I sit and time him in the laundry room. I set up a TV tray and a folding chair for him, and I can watch him and work on my computer at the same time. There is much less distraction for him in there, thus keeping the total time per meal shorter. Yay for that! I feel like my time is so much better spent now...as feeding goes.
I am implementing these changes for the first time today. We have been on vacation for almost two weeks, and that is no time to make changes. The clinic will call me next Monday to check on how things are going, so knowing that helps motivate me to get going on these changes. I like them so far, and feel much less frustration. Ben was resistant to the idea at first, but I don't think he minds it so much now. The most difficult meal is at dinner when I want to be fixing dinner for my family, and not sitting feeding Ben. I think that is where a helpful teenager comes in handy.
Overall, the time and money we have invested in these changes has been very worthwhile. I know Ben will keep improving. I think when he is older, and more mature, he will understand that he needs to sit down and get the job done. I can't wait for that time.
On the 24th, we went to KKI. Ben had a feeding appointment at 12:30pm. We fixed his lunch and I fed it to him. The session was videotaped for analysis, and his therapist also sat with her laptop and took data during the meal. While we were in the program, I felt tremendous pressure to follow all of the rules and guidelines for feeding Ben, but now that we are out, and I have had two months to tweak and adapt his program at home, and I do not feel that same pressure. That is a relief for me. Ben, of course, in the simple cocoon of a feeding room, ate his meal perfectly. In reality, Ben eats in our kitchen, and loses focus everytime someone walks into the room, or makes a noise. Now that school is out, every meal is difficult for Ben to focus on, and to get through. I was a bit disappointed when his meal went flawlessly at KKI.
Ben had his clinic appointment at 2:00pm. At that appointment, we met with all of the members of his team. We saw the dietician, his OT, the nurse, pediatric GI, and his behavioral psych. His team thought he was doing very well, and the dietician noted that Ben had grown two inches since his evaluation in October. His weight has only increased by about a pound, but she thought his weight would increase after some of the height settled down. The team member that made the changes was the behavioral psych., and I like what we came up with.
We changed the way Ben earns Level 3. The problem is that he is getting very distracted, and that he is wasting time in the beginning of his meal, and running out of time in the end when he needs it most, on the food that is most difficult for him. Budgeting is an advanced skill. So, we are allowing him two chances on pureed food, and four chances on regular textured food. If he goes over the allotted time (15 sec. per bite of puree, and 45 sec. per bite of reg. texture) per bite, he will lose a face on his chart. We also cut down the time allotted for purees. He was formerly allowed 30 sec. for a bite of yogurt or pudding, and he was wasting all of it, which made me CRAZY. It is like he has a timer in his head. Obviously he does not need that much time for one bite of food like that. He is adjusting well to only 15 sec.
The other change is where we feed him. The kitchen is too central. Now I sit and time him in the laundry room. I set up a TV tray and a folding chair for him, and I can watch him and work on my computer at the same time. There is much less distraction for him in there, thus keeping the total time per meal shorter. Yay for that! I feel like my time is so much better spent now...as feeding goes.
I am implementing these changes for the first time today. We have been on vacation for almost two weeks, and that is no time to make changes. The clinic will call me next Monday to check on how things are going, so knowing that helps motivate me to get going on these changes. I like them so far, and feel much less frustration. Ben was resistant to the idea at first, but I don't think he minds it so much now. The most difficult meal is at dinner when I want to be fixing dinner for my family, and not sitting feeding Ben. I think that is where a helpful teenager comes in handy.
Overall, the time and money we have invested in these changes has been very worthwhile. I know Ben will keep improving. I think when he is older, and more mature, he will understand that he needs to sit down and get the job done. I can't wait for that time.
Thursday, June 03, 2010
Time Flies!
It has been one month since I last posted, and an update is long overdue. Ben has been working hard at eating. He still needs the level system we set up at KKI. When I employ those methods, he works at eating, but when I don't have the time, he uses way too much time. He will often complain when I sit down to time him. He suggests that he can do very well without the timer, and he can do well, if you can be patient with a meal that lasts two hours.
Ben usually earns level 3. Last week he went through a few meals earning level 2, however, and he had some of his very special behaviors. As he gets down to only one or two faces left on his board, he will begin to get upset and throw things, as he has in the past. Tonight we had company over for dinner, and he got down to one face, and out of frustration, he launced his bowl of rice onto one of our guests. Then in his haste, he threw up a little when he tried to eat his chicken too quickly. If you are not used to being around that behavior, it is shocking to see, and I think our guests were surprised.
It has been wonderful having Ben eat what we eat. We went to our neighbor's house for dinner on Memorial Day, and initially I panicked when it came time to eat and I did not have his food. When I looked at what was available, I realized that I could put together a great meal for him. He had some hamburger (I introduced that a couple of weeks ago), strawberries, cheese, and cucumber. He did a good job eating his meal until he decided he didn't want to eat anymore, and not wanting him to throw up in their dining room, we let him go. We still have to tweak some things, but it was fabulous to put together a plate of typical food, and not purees. It is also wonderful to know that he will feed himself.
Lastly, we met with Ben's school last week to come up with a plan for him. He will be going to all day kindergarten next school year, and will have to eat at school. Initially the principal told me that she had neither the funding to get him fed, nor the space to do it in. She also told me that it was in his best interests, socially, to eat in the cafeteria. By the time his 504 plan meeting rolled around, I was armed with documents, and completely prepared to do battle. His sweet preschool teacher even attended the meeting to make sure Ben's rights were honored. Thankfully, we found an agreeable plan for him, and I am happy with it. The principal was much more willing to offer resources. We will have to wait until August to see if this plan will work, and if the school will be consistent in implementing the protocol. I hope it will work as it should, for Ben's sake.
Ben usually earns level 3. Last week he went through a few meals earning level 2, however, and he had some of his very special behaviors. As he gets down to only one or two faces left on his board, he will begin to get upset and throw things, as he has in the past. Tonight we had company over for dinner, and he got down to one face, and out of frustration, he launced his bowl of rice onto one of our guests. Then in his haste, he threw up a little when he tried to eat his chicken too quickly. If you are not used to being around that behavior, it is shocking to see, and I think our guests were surprised.
It has been wonderful having Ben eat what we eat. We went to our neighbor's house for dinner on Memorial Day, and initially I panicked when it came time to eat and I did not have his food. When I looked at what was available, I realized that I could put together a great meal for him. He had some hamburger (I introduced that a couple of weeks ago), strawberries, cheese, and cucumber. He did a good job eating his meal until he decided he didn't want to eat anymore, and not wanting him to throw up in their dining room, we let him go. We still have to tweak some things, but it was fabulous to put together a plate of typical food, and not purees. It is also wonderful to know that he will feed himself.
Lastly, we met with Ben's school last week to come up with a plan for him. He will be going to all day kindergarten next school year, and will have to eat at school. Initially the principal told me that she had neither the funding to get him fed, nor the space to do it in. She also told me that it was in his best interests, socially, to eat in the cafeteria. By the time his 504 plan meeting rolled around, I was armed with documents, and completely prepared to do battle. His sweet preschool teacher even attended the meeting to make sure Ben's rights were honored. Thankfully, we found an agreeable plan for him, and I am happy with it. The principal was much more willing to offer resources. We will have to wait until August to see if this plan will work, and if the school will be consistent in implementing the protocol. I hope it will work as it should, for Ben's sake.
Tuesday, May 04, 2010
Congratulations Graduate!
On Thursday, April 22nd, Ben graduated from Kennedy Krieger Institute's Intensive Feeding Clinic. He made incredible gains while there. I am amazed at the improvements that were made in 8 weeks. His variety of foods and textures are many, his meal time has been shortened dramatically, and his overall attitude toward eating is very positive. He has become one of my better eaters. He seems proud of himself for the growth he has made, and is excited to show off his new skills.
Since being home, I have added cheese cubes, grapes, watermelon, and ham to his list of foods he will eat. He has a big enough variety of foods, that it is usually no problem to put a meal together for him that is similar to what his siblings are eating for lunch, or to our family's meals. Last night, for example, we ate Hawaiian Haystacks. I served Ben chicken, rice, cucumber, and carrots, as well as his yogurt that he gets with every meal. To be able to fix him a plate like ours was awesome! I am not missing those purees at all.
Ben is still working on developing his eating skills, however. He is overcoming his oral sensory issues, and is learning to move food around his mouth effectively. He is working on chewing. When he doesn't chew enough, or tries to swallow too big a bite, he gags, and sometimes throws up a little. I am working on being patient with this, and it is hard for me. I have to remind myself about how much progress he has made, and try to dwell on the positive, especially when he leans over and spits his food out on my floor. It is then that I try to think of all of the miracles that have happened, and not about the mess that has just splattered around my feet.
The transition home has been better for me this time. When I returned home from Richmond, VA, 3 years ago, I felt like I didn't belong there or here for about 2 weeks. This time I slipped back into my life easily, but the jet lag was killer. I found no pleasure in waking up at 3:20 in the morning ready to get busy with my day. Old habits die hard. The housework was also a bit unpleasant. When it only took me 30 minutes to clean my room, bathroom, and to fold laundry, I got spoiled. Doing laundry for 7, and trying to keep up with the house is demanding. I suddenly have a lot of hungry people looking to me to provide a yummy dinner, while a yummy dinner was provided for me every night at Ronald McDonald House in Baltimore. I am not complaining, because I am so happy to be home to my sweet family, I am just adjusting. I do love being able to hug my kids again, rather than staring longingly through my webcam. I also love being able to go running outside...safely. The "House" is in a very bad area in Baltimore, and I never ventured outside of the House late at night. In fact, most of Baltimore was an area I did not venture into if possible. I am grateful to be home.
My whole trip was, overall, a wonderful experience. I loved being at KKI, and feel like the opportunity to stay at the House was a huge blessing. I met incredible people along the way, and made some great friends. I am also grateful for miracles, and know that they still happen today.
Since being home, I have added cheese cubes, grapes, watermelon, and ham to his list of foods he will eat. He has a big enough variety of foods, that it is usually no problem to put a meal together for him that is similar to what his siblings are eating for lunch, or to our family's meals. Last night, for example, we ate Hawaiian Haystacks. I served Ben chicken, rice, cucumber, and carrots, as well as his yogurt that he gets with every meal. To be able to fix him a plate like ours was awesome! I am not missing those purees at all.
Ben is still working on developing his eating skills, however. He is overcoming his oral sensory issues, and is learning to move food around his mouth effectively. He is working on chewing. When he doesn't chew enough, or tries to swallow too big a bite, he gags, and sometimes throws up a little. I am working on being patient with this, and it is hard for me. I have to remind myself about how much progress he has made, and try to dwell on the positive, especially when he leans over and spits his food out on my floor. It is then that I try to think of all of the miracles that have happened, and not about the mess that has just splattered around my feet.
The transition home has been better for me this time. When I returned home from Richmond, VA, 3 years ago, I felt like I didn't belong there or here for about 2 weeks. This time I slipped back into my life easily, but the jet lag was killer. I found no pleasure in waking up at 3:20 in the morning ready to get busy with my day. Old habits die hard. The housework was also a bit unpleasant. When it only took me 30 minutes to clean my room, bathroom, and to fold laundry, I got spoiled. Doing laundry for 7, and trying to keep up with the house is demanding. I suddenly have a lot of hungry people looking to me to provide a yummy dinner, while a yummy dinner was provided for me every night at Ronald McDonald House in Baltimore. I am not complaining, because I am so happy to be home to my sweet family, I am just adjusting. I do love being able to hug my kids again, rather than staring longingly through my webcam. I also love being able to go running outside...safely. The "House" is in a very bad area in Baltimore, and I never ventured outside of the House late at night. In fact, most of Baltimore was an area I did not venture into if possible. I am grateful to be home.
My whole trip was, overall, a wonderful experience. I loved being at KKI, and feel like the opportunity to stay at the House was a huge blessing. I met incredible people along the way, and made some great friends. I am also grateful for miracles, and know that they still happen today.
Subscribe to:
Posts (Atom)
