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.

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.

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.

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.

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.

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.

It Is All About the Level System

With order and security in his life again, Ben has done very well today. He earned Level 3 on each meal, and chose to eat mac-n-cheese today. The dietician would like to see Ben go home with more veggies than carrots and peas, and so tomorrow Ben will have a choice of cucumbers, and cauliflower. On Thursday, he will have a choice of cauliflower and green beans. I'm so good with that!

It's All Fun and Games Until...

your best friend goes home. The clinic also chose to remove Ben's level system today to see if he really needed that much motivation and structure. That change rocked his little world, and he fell apart in breakfast and lunch. He had some mighty fine behavior, including throwing food, spitting food, intentional vomitting, and even threatening to wet his pants. It was a very special day. They most definately got some interesting data from Mr. Ben, and the level system went back into effect for dinner.

Chocolate Milk and Miracles

Yesterday I flew solo all day. I made all of Ben's meals according to the menu they gave me, and followed protocol. The meals went smoothly, and Ben did a great job. I did change his whole milk when my good friend left behind some organic chocolate milk. Ben was very interested in drinking it, and I figured that was a good thing.

There is an older couple staying where we stay, and we have gotten to know them, and love them. We eat a lot of our meals with them and their son. The man used to be a wrestling coach, and is a tough, but kind guy. They asked if Ben had any nicknames, and I admitted that he did not. They liked the fact that he was trying chocolate milk, and proceeded to call him "Chocolate Milk" the rest of the day. Ben seemed pleased with that. I was pleased that he drank a new flavor.

We are so thankful to be here. The fact that we are is a miracle. I have had contact with others who have been on the waiting list for about a year, and have not heard from the clinic. Ben was evaluated here on October 29th. He began the program on March 1st. He was in the door in four months, and will be out by six months. I am so grateful for those who have prayed faithfully for us to be here, and for things to go smoothly for us. I am also amazed that we were able to choose a new insurance company that works so well with this facility, and that approval happened so quickly. Wow!

One other miracle is that we were here when our new friends were. They live in Kentucky, and are an hour from the place we will be moving in one year. She and I hit it off, and I am definately missing her friendship, as they graduated on Saturday. We went on all kinds of adventures here, and had fun exploring and planning our days together. Just like the moms formed a quick bond, Ben found a special friend in her son. They have been inseparable for seven weeks. The clinic even did a co-treat with the boys, for the first time ever in the clinic's history. Ben and his buddy ate together while my friend and I used their individual protocols to feed them. I look forward to being able to see her soon. Her son was evalutaed in mid-August, and I do not believe that it was chance that put us together for these seven weeks. Yes, miracles still happen!

Today we went into the clinic for a "makeup" day. Ben's most recently mastered food is pizza, and he was introduced to rice in his last meal this afternoon. Tomorrow he will eat rice in all of his meals, and I will introduce a new fruit at dinner. He should get to choose from three fruits, but I only have a banana right now. I am hoping that the breakfast that gets donated in the morning will include some fresh fruit. The clinic was short on that today since it is Saturday. All told, Ben has mastered 16 new foods during this admission, and he will add more next week. He is also a fan of Five Guys french fries, which we were enjoying outside last night until it began to rain on us. I am thrilled by the variety of foods he will eat.

I haven't posted about the traffic or pedestrians in a few posts, so I'll tell you my fave of the day. In two separate incidents, I witnessed a pedestrian pass up his opportunity to walk when the white walk signal was on. They, instead, chose to wait until the red hand was solid, and traffic was trying to go. While the cars were attempting to accelerate, the men stepped out into oncoming traffic and appeared irritated at our efforts to move forward. Color blind? Signal blind? I cannot explain such ludicrous behavior.

A special note of thanks to Ben's preschool teachers and classmates who sent Ben adorable notes. He loved reading them, and it meant a lot to him. He also got a card from his sweet bus aide. We love the staff on bus 56!

Puree-Be-Gone!

My dad will sometimes tease me and say that I am "slow, but accurate." This morning it dawned on me that my pureeing days are OVER! I cannot believe it! Ben has taken off in his eating. The behavioral psych told me it would happen, and I tried my best to trust her, and she was spot on. I never dreamed this day would come. This is nothing short of a miracle.

What a Difference a Change Makes

Yesterday, Ben had a couple of rough meals. We were struggling with bite size. I was trying to judge the size that was acceptable, and Ben could not tell what was expected of him, so he was nibbling. In breakfast, when he realized that he was going to be a level 2, he went for broke. It was one of those moments when I wished that I could pull a Spiderman, and take a photo from the ceiling of the feeding room. His nibbles on his pancakes were ridiculously slow, so between the nibbles (which do not count as a bite), and taking nibbles too slowly, he was demoted. Upon demotion, he began hitting, screaming, spitting pancakes, then throwing pancakes, he threw his plate, launching the spaghetti noodles, and for the grand finale, the cup of milk hit the wall, popping the lid, and milk splashed down the wall, and spread across the floor. There was breakfast carnage everywhere. I wanted to lay on the floor and laugh till it hurt, but that would break protocol, so I forced myself to behave. Lunch went the same, except he somehow managed to earn level 3.

Two disastrous meals caused the feeding therapists and the behavioral psychologist to huddle for a brainstorming session. Their solution was simple. All of his food would be cut into the appropriate size bites. I loved it! Ben loved it too. At dinner, he zipped through his sandwich in no time, and his snack in the evening was no challenge at all. Today his meals have been picture perfect, and a complete turn around from the snapshot of the previous day's meals. Miraculous!

The clinic is going to start aggressively introducing new foods. They asked me for a list of foods that I would like him to eat. My ideas: chicken, grilled cheese sandwich, hamburger patty, green beans, cauliflower, baked potato, and sweet potato. They will use one day per food, assuming he does well with the plan. He will be expected to take two bites in ones meal, five in the next, and ten in the last. That food will then become part of his regular meal rotation. The irony of this treatment is that he will be a better eater, by far, than his adorable and picky twin brother.

All the New Foods

I thought I would give a quick listing of Ben's foods that he has added since being here: steamed carrots, steamed peas, hard boiled egg whites, diced apple, orange sections, chocolate pudding, applesauce, peanut butter and jelly sandwiches, and the latest... spaghetti in marinara sauce. We have two weeks left, and I am dreaming of the possibilities. I am so thankful to be here, and thankful for all of those helping to make this possible for our family.

Stressed by a Peanut Butter Sandwich

As I said, I am doing the feeding now. I am happy to be the "boss," as Ben calls it, but it is much more difficult than I thought. When I feed him, there are two data takers in the room tapping away on their computers, evaluating every move that Ben and I take. This afternoon, the stress of being dissected at each moment was almost too much. I know they have to be in there, and I know their data is important, but I am struggling with being in the hotseat, and thinking on my feet is a substantial shortcoming for me.

The food that is throwing me off is the PB sandwich. I have to judge each bite's size, and decide if it is big enough to count as the size of a green pea. If it is a big enough bite, I praise him, and we move on. If the bite is more of a nibble, then I ignore it, and do not reset the timer until he takes an appropriate size bite, or the time allowed per bite is up. It all boils down to a judgment call, and you do not have time to second guess yourself. The thing that makes this burdensome for me is the two data takers sitting there evaluating my actions. I am trying to block them out. I thought their poker faces were hysterical until I found myself under their magnifying glass.

Being a self-proclaimed foodie, I have to mention the delectable dinner that was brought in tonight. A yummy salad, crab chowder, crabcakes, grilled chicken (which was so moist), ribeye steak, grilled fresh veggies, and a vast array of dreamy desserts. I had to take a picture of my plate so that I could savor the memories. Sadly, I was too beaten down by the sandwich stress to work out today, and was completely lacking in enough self control to resist the creamy chowder and dessert. I glutted shamelessly.

I may not love the freakish pedestrians, and am stupified by the city drivers, but the generosity of the community is remarkable. Many people here are the epitome of charity.

Protocol or Parenting?

Ben has been doing a "miralax" session in the clinic ever since I mentioned that he was taking 40-60 minutes to drink his water with miralax every morning. It was a stressful situation for me, as he needed to get it done before we went to the hospital each day. We usually do the sessions at 2:00pm, and he usually gulps it down in twenty seconds, leaving me to wonder why he would not do that for me. When we do the miralax session, there isn't really protocol other than completing it within 15 minutes, and there is no punishment for not completing it.

Today, Ben was very upset that his best buddy's dad is in town. His friend and his parents went out to lunch, and I wanted to take Ben for a walk outside to get fresh air during my lunch. Ben could not understand why he could not see his friend and play with him. He whined and complained for our entire 30 minute walk, and when we went upstairs to do our miralax session, he ramped it up. He refused to go to the bathroom, he hit, kicked, screamed, and had to be dragged into the feeding room as he performed the limp body manuever that kids seem to be so good at. When the therapist put him into the feeding chair, he tried to kick her, and then pushed against the high chair tray making it difficult to attach. He was really on one. I presented the miralax (a flavorless, textureless substance mixed with about 3 oz. of water), and he sipped slowly, but still finished within two minutes. When he was done, he looked at me and snarled. I then asked him to use his words. He then screamed "get me out of here now!" I calmly told him that I would be happy to take him out when he asked me in a nice manner, and I looked away from him and waited for him to calm down. His therapist shot me a little look, but said nothing. Ben eventually calmed down, and I took him out, and we were on our way.

Before dinner, which I would be feeding to him, his therapist asked to talk to me. I knew I had done it. She then explained that I had done the wrong thing, and that the clinic's protocol is to ignore bad behavior, and to not give kids the reaction they are seeking. Okay, I got that. However, I feel that if I just ignore his nastiness, he will think it is okay to be nasty. I refuse to have my kids treat me that way. Some things are ignorable, like when he threw his green peas on the floor, or when he throws up or spits food out, but disrespect is not working for me, especially in a session that they claim does not really have a true protocol. I feel like she crossed the line from protocol to parenting, and I was not happy about it.

Some Like It Hot

...and some really don't. It was a record temperature here today, and it was hot. Yep! Even hotter than Phoenix. I packed clothing for winter, so I am scraping by with my two pairs of shorts, and four short sleeve shirts. I did bring my work out clothes, and I ran on the treadmill in a room that was just as hot or hotter than outside. It was misery. I am looking forward to a cooler weekend, even if that means rain.

Ben did well today, except for his carrots. In his dinner meal, (yogurt, applesauce, pb sandwich, and carrots) he saved the steamed carrot slices for last. He was really gagging those down. When he spits up/throws up, the therapist doesn't hesitate, and places another bite of carrot in his mouth, then wipes up the mess. I think he thought he was getting away with the gagging-spitting thing, because he started doing it on every bite, and was working through the carrots quickly that way, and his therapist just wiped up what he gagged up. Suddenly, his therapist got up and quietly left the room. When she returned, she had a bowl of carrots. Ben just stared at the bowl with big eyes. She nipped that behavior immediately. He ate his last few carrots perfectly.

I'm Going In!

Ben is doing remarkably well. He is making incredible gains here, and he is having a blast. When he is not eating, he is often in the playroom. He has made it his duty to cheer up any sad kids, and is getting quite the reputation for being social, energetic, and fun. He has even got a secret admirer in a little girl who has crush on him. The lady at the hospital who sells stamps loves to see him running down the hall, and swears that she is going to bottle his energy and sell it. That's Mr. Ben.

In his meals, his plate is looking more and more typical. For dinner this afternoon, he was served peas, applesauce (a new food for him, see post from 10/29/2009), yogurt, and 1/3 peanut butter and jelly sandwich. They are keeping some purees in his meal so that he does not get too tired from all of the chewing. The clinic also serves him a totally different combination of foods at each meal, as they have noticed he likes things to be the same, and it rocks his world when they are different. He needs to adjust to constant change.

Tomorrow, I will be worked into his meals. I will do a role play with his therapist to practice, and then will start sitting in the room with the data takers, and then will eventually feed him. They want to watch me feed him to see if any problem behaviors come up for me. They said parents have a way of bringing that out in their kids...imagine that. They will also train me to introduce new foods to him so that he understands that I will definately be doing that, and he will definately be learning to eat that food. They said I will introduce atleast two while I am here. That is my biggest concern, and I am so happy that they will be addressing that. They will also help me come up with a plan for school lunches and snacks next year. Hooray for all day kindergarten!

Top 3 Traffic Maneuvers

I've only briefly mentioned the driving here, but it is a daily challenge that I have to face. It takes all of the courage and patience that I can muster to deal sanely with the insanity. So, I've done a bit of driving around today, and I've collected my top 3 favorite traffic conundrums, in no particular order.
1.) A lady in front of me comes to a full and complete stop at a green light, as if it is red, and continues to sit there for the duration of the green and the red light. She completely disregarded my Sentra's little bleating horn.
2.) A pedestrian runs directly in front of me as I am driving about 35 mph. I slam my brakes, and he continues across the lane to my right, causing a similar reaction from the car next to me. The pedestrian continues on as if the onslaught of screeching cars never existed at all.
3.) A man on his bike rides toward me head on in the center of my lane, as I am driving toward him. A very lopsided game of chicken? Insanity? No, just another normal day on the streets here.

I am enjoying my journey with Ben much more than my journeys on the road. Today he ate chocolate pudding. He loved it the first time he tried it, but at dinner, he made some crazy faces as he choked it down. It is replacing the pureed peaches in his regular meals. When he is comfortable with the pudding, it will be replaced by another puree that I can conveniently purchase, like applesauce, hummus, or refried beans. They are trying to decrease my workload, and I am thrilled with that thought. I will not shed a tear when I no longer have to make baby food.

Today Ben's carrots were removed form his meal, and he was given 20 green peas to eat. He did very well with them. He only eats one at a time, but the fact that he will willingly eat something green is fabulous. He was also presented with three choices at dinner: pancakes with syrup, pieces of bread with peanut butter, and diced boiled egg. I was surprised that he chose the two pieces of bread. I thought he would choose the pancakes, but then I saw that they were purple, as they are blueberry, and then I realized that was too foreign to him. They have also noticed that he will go for something familiar to him, even if he does not like it yet. He has been working on peanut butter in OT. So for dinner, he ate yogurt, pudding, 20 peas, raisins, diced apples, and two small pieces of bread. Not bad.

I ate lunch at a garden area near the building we go to. It was an absolutely gorgeous day. I soaked up the rays of sunshine and basked in its warmth. It made me miss my Arizona sunshine. On the way there, my friend offered Ben a blueberry. When he saw his good buddy eat one (a first for his friend, too), Ben grabbed one, and put the whole berry in his mouth. That was amazing! The fact that he put a wet food into his mouth, and that he put the whole berry into his mouth is wonderful. He topped it all off by eating one more blueberry. This clinic is a miracle.

Half Way There!

Woohoo! We're half way finished. This has been absolutely amazing so far. I am loving the journey, and enjoying the progress Ben is making. He is working hard out here.

Ben is currently adding a number of new foods, and there are some new plans in the works. The program is tailored to each child's special needs, so the treatment that is given to Ben is completely unique. During the week, he has been given yogurt, pureed peaches, raisins, diced apple, steamed carrot slices, and steamed peas, on his plate. He is working well through the carrots, which have been added to his regular meal rotation. He doesn't love them, but he tolerates them. He gags occasionally on them. He is doing well with the peas. When he tried them on Monday for the first time, he said "mmmm, I do like these." One of those good old "Sam, I am" moments. He is required to eat eight peas, and will do 10 tomorrow, and then those will go into his regular meal rotation, and something new will be added. Now that he has a couple of veggies, they will try some starches, and proteins. I think hard boiled egg is coming. Now that should be interesting.

In speech and OT, he is working on peanut butter and jelly on bread. He has a difficult time mixing foods and textures, so eating anything on his bread is a foreign thought for him. Today he went to speech with his best buddy, who is also working on peanut butter, and they ate diced apples with peanut butter and a raisin. I never thought he would ever do something like that. Nothing like peer pressure to help you shed your fears. It was fun to watch Ben and his friend work together in there, and I am thankful for that cute little buddy of his.

Last night, Ben got to meet Lucie, who donated the Build-a-Bear to us, and to a bunch of the kids here. He was thrilled to finally see her. She is adorable. She read them stories, played hide-and-seek, did activity hour, and hung out with them. I wanted to take her home. She is one of those people who never thinks of herself and has a heart of gold. Truly rare characteristics in an 11 year old.

Over the weekend, I stayed with my sweet sis. I love her! On Saturday, we got dressed in formals, her spouse in his military tux, and went to a black tie fund raiser. It felt dreamy to be dressed up in bling, and out for a cultural event. We saw Jenny Oaks Baker, former first violinist for the Nat'l Symphony Orchestra. Her music was as magic as the whole evening. The fund raiser was for Singular Humanitarian experience, a worthy cause. The weekend was a refreshing, and much needed change from sitting in a hospital all week.

Great Ending to a Tough Day

(see previous post first) I have good news to report. For dinner, Ben was given his 3 oz. yogurt, 2 oz. peaches, and 1 oz. diced apples, and 4 slices of canned carrots. He began with the apples, and it still took him a long time to get through them, but he accomplished that more quickly than he did the raisins. He lost 7 of the 8 reminders, but was very aware that he still had one more chance. He gobbled the yogurt, made it through the peaches, and gagged nicely on the first carrot slice, but ate the next three like a pro. He drained his milk with lightning speed, and had 48 seconds left on the clock. Toward the end of the meal, his feeding therapist was definately pulling for him. She is usually a machine, and probably broke protocol a bit by showing happiness, but I think she knew how difficult lunch was for us. Ben burst through the door that leads to the hallway where I pretend I've been sitting all along, and I gathered him in my arms, and we celebrated together. Talk about joy! He is Level 3 once again. Congratulations Ben!

Heartbreak on Level 2

I usually don't post during the day, but I have some time since Ben is Level 2. This time it is not a bad thing, except for the fact that it is killing me to carry out the consequence. He did great at breakfast. He raced through his yogurt, then tackled his peaches, and decided that he made it too difficult for himself last night with the carrots, and willingly ate both slices of carrot. He earned Level 3 again, and we celebrated by playing with the hula hoops. Because of his success in the first meal, they decided to increase some demand by adding raisins to chew, and 2 additional carrots. I thought that sounded reasonable, as he needs to learn to chew efficiently in a meal setting. I was pumped.

For lunch, they presented 3 oz. yogurt, 2 oz. pureed peaches, 1 oz. raisins, and 4 carrot slices. He had 8 reminders available for taking bites, and 25 minutes to get it accomplished. He chose to begin with the raisins. He worked, and chewed on that ounce of raisins, and it took 20 minutes to get it done. Yikes! I was biting my nails, sweating bullets, and cheering for him. Could he do the impossible in 5 minutes? No. But I saw Ben attempt the impossible with his whole heart and soul. He ate quicker than I've ever seen him go. He slurped the milk down, and gagged on the first carrot, but ate the next 3 readily. Wow! What a guy! I believe the level system works for him. Sadly, he just couldn't get through those raisins in time. Because it took him so long to chew, he was still chewing when the time per bite expired, and it counted against him as a reminder. OOoohh, the pain in my heart for him as I watched him learn that he didn't make it for level 3 when he earnestly tried.

He ran from the room, and fell into my arms sobbing. I sobbed too. It was too much for me to take. I am almost never emotional, but that was too much for me. I would have to carry out a consequence for something I knew he had given heart and soul to prevent. There are not words for how I have been feeling about this, but I had agreed to be consistent no matter what.

They will tweak dinner tonight so that he has a fair chance to earn Level 3 again. I don't think they knew how difficult chewing is for him. I didn't think being consistent would be so difficult for me.

Treatment Has Officially Begun!

I thought that treatment had begun last week with the level system, but I was surprised to find out I was wrong. After I got home last night, and had time to ruminate, I realized that things were not moving as quickly as I had hoped. We are 3 1/2 weeks into this, and no treatment package. I went in to the hospital this morning feeling frustrated about that, then found out one of the other kids has a stomach bug, had diarrhea, and vomitted all over the floor, and proceeded to go to the playroom to play all day. Then, when I asked about feeding Ben steamed frozen peas instead of canned, I was told that it would be a bit hard to do, but they would try to clear it with the nutritionist. My day was off to a bad start.

I caught the nutritionist as she walked in the door for work, and I worked things out with her. I couldn't understand what was so hard about microwaving a handful of frozen green peas. I certainly don't feed my family canned peas at home. She is onboard, and gave clearance for the use of frozen peas, carrots, and green beans. I prefer fresher veggies, and I think it would be better for Ben, too. One problem solved.

Next, I discussed my concerns about his treatment plan, or the lack thereof, with his feeding therapist. She reminded me that she has to follow the plans the behavioral psych doctor gives her, but that she agreed that we should be able to get going. She would go to bat for me. Problem two almost solved.

As for the sick kid, I explained my concerns to my social worker during our standing appointment we have every Wednesday at 2 pm. I told her that I, and another mom, had chosen to keep our kids out of the playroom for the day because stomach bugs are very serious in our kids. I don't understand why two healthy kids should be kept out of the playroom so that a sick kid could play all day. A few weeks ago, the RN was monitoring another child's fever while we were in there playing. Is there a playroom or sick kid policy? Problem 3 being researched.

Dinner was our first treatment meal. It went very well...initially. He raced through his yogurt, slugged his way through the peaches, and was getting excited to earn his Level 3 Badge again. His motivational plan is back, and is part of his treatment. Then came the carrot slices from a can. I could almost hear the sound of car brakes skidding as I watched him try to take a bite. He refused the carrots, but this time, refusal is not an option. He is required to take a bite, and keep that bite in. He spit, coughed, screamed, hit, and threw up again, and again. The behavioral psych told me that the initial sessions can be hard to watch because of that, but I assured her that I was no stranger to this behavior. In the end, he took his two bites of carrots, but he did not like it. When he failed to earn his Level 3, he looked completely crestfallen.

On the drive home Ben suggested that I should've prayed. I asked him what he meant by that. He said I should've prayed that he could eat today. Man, that little guy has faith. I told him that we could pray in the morning before we go to the hospital. I do pray for him. I pray morning and night for him, as I have for years. Friends and family have prayed and continue to pray for him. I do love Ben's faith.

Tonight I am tired. The battles have worn me out. I am looking forward to going to bed. Tomorrow will be a better day!

Charity, and More Charity, and Green Peas

Tonight I was only going to write a quick entry about the green pea incident today, but again, I am blown away by an act of charity by a child. This evening, I was going to get in line for dinner when a long line of boys filed in ahead of me. I was wondering who they were, as I had never seen them before. A lady in front of me explained that it was a birthday party for a 10 year old boy named Toby. He had decided that he would give his birthday gifts to the families who are staying here, and not keep any for himself. He even collected extra donations to give away. How is it that a child can have an understanding of charity that most adults don't realize in a lifetime? I have so much to learn. I think I'm being schooled by the best, and I plan to pay it forward when I get home.

Then, a youth group from a Catholic church came and made fudge with the kids. Ben is allergic to corn, and there were cornish ingredients, so he made it for me. He had fun stirring in some mix-ins. It was a great way for him to interact with food. The youth group comes in here once a month. What a neat way to learn to serve others.

As for those green peas...for dinner they gave him his usual yogurt and peaches, and a cup with 2 green peas in it. They are still doing "baseline protocol," so they are not requiring him to eat them, and he didn't. He looked at the peas, rolled them around in the cup, then dumped them out, and finally picked them up and threw them on the floor. His therapist didn't even flinch. I was in the observation room laughing till it hurt, but she is a machine. After he finished his peaches, he was given 2 more peas, and you guessed it, they were sent rolling across the room too. We've got our work cut out for us.

Level 2 Shame, and Back to Baseline Meals

Ben is just not a morning person when it comes to eating. The first meal is historically bad, and today was no different. He blazed through the yogurt at breakneck speed, but hit the wall on the peaches. He required a couple of hand-over-hands, and too many reminders to take a bite. Down came the sad faces from his chart of visual clues, and down came the super-duper Level 3 Badge. Ben became a Level 2. Oh the shame! He was so upset. After the meal, he whispered in a sorrowful voice that he did not want to wear the Level 2 badge. As part of Level 2, he had to sit in the hall with me and play with a bag of not-so-exciting toys, and sit with his not-so-exciting mom. I read a couple articles from the Ensign, and then turned to the first Percy Jackson book. (I know it is a kids' book, but I wanted to know what all the hype was about) I was not supposed to interact much with him, and I didn't. When he realized that I was no fun, and that he couldn't play with his little buddy in the playroom, he was in tears. Let me assure you that lunch went a whole lot better. I knew he would learn quickly. I just love consequences.

For dinner, we went back to baseline. This simply means that the experts want to know if the improvements he has made with speed and independence are because of their treatment, or because of some other reason like being in a new environment, or not having a bunch of siblings causing distractions. They like to have atleast 3 consistent sets of data. It all comes down to data. When his behavioral psych explained this, I had to chuckle as she walked away. I really wanted to wish her a good time analyzing data. After the 3 meals, we will go back to some type of protocol, and I think they will start adding new foods, and new expectations. I'm so ready for that, as I am entering my fourth week here. Let's get the show on the road!

Not A Level 3 Weekend

The Level 3 momentum did not carry over into the weekend. He was back to his same old charming self during meals. I fed him most of his food, and he put up some lovely resistance. I was not given any instructions for this weekend by the clinic, and so I did what I always do. We spent Saturday and most of today at my sister's house (love you sis!), and with the distraction of lots of little ones, he had a difficult time. Breakfast today was particularly tough, and I finally grabbed my nephew's high chair, and put Ben into it. Thank goodness he is a small 5 year old and fit nicely in the chair, or I am pretty sure I would still be chasing his mouth with a spoon of watery oatmeal.

Tomorrow Ben starts the "early block." I noticed there was a vacancy for that slot, and leaped at the chance to go, see, conquer, and get home early. I was finding that by the time he finished at the hospital on the late block, we drove home, I worked out and ate dinner, I was not able to find time to feed Ben one more meal. He was then hungry at bedtime, and I don't like to fill my little ones with liquid at bedtime. I am grateful the therapists let me change. (My therapy is working out. I felt a bit selfish trying to change the schedule so that I could fit that in each afternoon, but I feel like a happy, balanced mommy leads to a happy Ben.)

Sometime tomorrow, probably not at breakfast, Ben will be required to eat more than two bites of a typical textured food. He has been offered three choices: 2 bites of chopped apple, 2 bites of clementine orange slices, or 2 bites of pureed garbanzo beans. Yep, he really didn't go for those beans. He has been choosing apples the past few days. They will increase the number of bites of those choices, then start decreasing the number of foods he likes, and increasing the number of new foods. I suppose that they manipulate his choices without making Ben feel powerless. It will be interesting to see how this goes. It sound so simple here.

Level 3 Super Powers

Ben has moved up to "Level 3." As part of the way to motivate him to eat without prompts and in a specific amount of time, Ben has been given two levels. Level 2 means that he had to be prompted or helped hand-over-hand more than the allotted amount of time, and will be able to play with some less exciting toys in the hall. Level 3, however, earns Ben the praise of all the therapists, the playroom people, and anyone else who will give it up for him. He wears a nifty level 3 badge. He gets full access to the playroom, the DS for 15 minutes if he chooses, a movie, and playtime with his cute little buddy he met here, and loves. Level 3 also has privileges that extend into our evening activities. I love the plan, and can see him working hard. I have no idea how it could work at home, but hopefully he will pick up on speed while we are here, and it will be a habit by the time we get home. The behavioral psych feels like the progress we make now is slow, but is laying a good foundation to build on in the next few weeks. She thinks it is worth it. I have to trust her.

As for the Leprechaun party, we had fun. We counted shamrocks, and found the most. We did some St. Patrick's Day crafts. Ben looked for the leprechaun, found a few of his footprints, but could not find him. Ben totally thought we would be finding the leprechaun, and was disappointed when he did not. I was really hoping to find the pot of gold, and was disappointed when I did not. (The shopping here is fantastic...if I could just find the time and pot o' gold to go!)

He Tipped His Hand

Yesterday Mr. Ben tipped his hand. He let us in on his little secret that we had simply speculated about before. He has been deciding whether the motivator is worth it to him. If he really wants to watch a movie, he will feed himself, and do it in the specified time, but if he would prefer to play in the playroom with his friend, he chooses not to feed himself, and gladly gives up the privilege to watch a movie. He told us that he was okay with missing Scooby Doo because there was a Leprechaun party later. Aaah! Got it. What he doesn't know is that the behavioral psychologist is analyzing everything. His motivating prizes are about to change. He may not like some of the consequences of not feeding himself, and not getting the meal finished in the allotted amount of time. It will be interesting to see what the team comes up with.

My Fortunes

Tonight we had Chinese food. It was yummy, and a good break from pasta. I was checking out the fortune cookies, and decided to keep eating them till I got the one I wanted. My first one was "You will be successful in your career." OK, I'll take success in parenting, but I'm feeling secure in that for the moment, so I kept going. "Romance will come your way soon" was next to come my way. Yep, Romance will be boarding a plane and heading my way in a while...patience. Finally, the stopper. "Happier days are definately ahead for you. Struggle has ended." Yes! I couldn't have picked a dreamier fortune.

Speaking of the struggle, things went pretty well today. I find that as Ben tries a few things successfully, I want to push more. I am having to learn patience. I also look at the calendar, and we are down to 5 1/2 weeks, so I want to see him begin to meet some goals. In OT, he ate 1/2 inch pieces of apple today, skin on. He ate a grape, which is not a fave. Again, those are foods that will go well in a lunch box. Hooray! As for those chickpeas, he is still eating one bite per meal. He is giving less resistance, and getting used to them. I was hoping they would increase the number of bites of those chickpeas, but they are still wanting to work on efficiency. Ben will dawdle endlessly in a meal. He uses silliness as a coping mechanism, and goes out of his way to pester his feeding therapist. He loves to look into her eyes to see if he is going to get a rise out of her, but she is like a machine! She should play poker. I am sure hoping that in 5 1/2 weeks, my struggle will have been decreased, and that happier times will come.

Charity

I have to comment on the acts of service that have been provided to us. I am completely overwhelmed and amazed at what the community does for us. Last week Ben was given a Build-A-Bear. Until tonight, I did not know who or what organization had provided it. I figured it was an organization, because he was not the only child to get one, and the price tag indicated that Ben's bear "Scott," as Ben has affectionately named him, is $15. I have been asking for the name of the donor for a few days, because I want to write a thank you note. Tonight, while I was on the treadmill, and already out of breath, I was told who had given Scott to us. It was a 10 year old little girl, who decided she would give away as many as she possibly could. She began doing this about 15 months ago, and thus far has placed 184 bears. I was completely breathless when I found out. At 10 years of age, she cannot possibly have a high paying job. She gives all of her birthday and Christmas money away, and any other money she gets. Her name is Lucie, and I submit that she is a true disciple of Christ. She has completely forgotten herself, and compassionately gives to others who are in need. What an example!

In the evenings, people come in and do projects with the kids. Some of the projects are very simple, and some are not. Tonight, "Miss Trina" came in and read a bedtime story, then did a craft, and provided a snack that went along with the story. We made treasure boxes, and she gave the parents a small card that we could write a message for our child on, because that would be a treasure fit for the box. Next she gave each child one bead, and each parent a bead for each loved one they were separated from. She asked me how many I needed, and I laughed, because I have left my other 4 kids and a spouse behind. Lots! She explained that those represented our heart, and when we missed those others, we could hold their beads close to our hearts and feel closer to them. She gave me a set of beads to mail home. Simple, but heartfelt activities. I hope I can carry this attitude of giving to others back home, and pay it forward. Truly, charity never faileth.

Week's Update

Ben has done very well in his OT (occupational therapy) this week. He is working willingly with the therapist, and does especially well with a reward of some kind to motivate. She is working on his ability to chew. He only eats purees, so his muscles that he would use to chew are completely weak. She is working on building those with a chewy tube, a rubber chew toy type of thing. She has also noticed that he uses his front teeth to chew. That is very ineffective, and takes forever to get anything chewed up when the back grinders are not being utilized. She is teaching him to move food to the back of his mouth to be chewed there. She also gave him a couple sections of a clementine orange. He was able to eat that, even though it took about 10 minutes to get through it. The next session, he ate half of a clementine, and in the last session he ate a whole clementine in 11 1/2 minutes! That might not seem like a big deal to most people, but for a kid who can't chew correctly, and has severe oral sensory issues, that is huge. I am also excited because I will be able to put an orange into his lunchbox next year, and he will be able to have a "normal" food to eat at school. She is also working on adding texture to his food, and will let his feeding therapists know when they can add texture to his meals.

As for his feeding therapy, they are working on eating in a decent amount of time. They are using movie time to motivate him. He loves to pick a movie, then earn 15 minutes of viewing time. He gets through movies piecemeal, but he eventually does get through them. When he eats now, he is rewarded for eating quickly, and for taking bites by himself, without therapist help.

As for the pureed chickpeas or garbanzo beans, he hates them. They have thus far required him to take one bite per meal. He will do it as long as the therapist feeds him the bite, and he fights her off by hitting and turning his head. He really gags on it, but in the end, it goes down. He refers to the pureed chickpeas as "chicken peas." He is convinced that he only likes his 5 breakfast/lunch foods, so anything outside of that list is a food that he doesn't like. I'm so hoping they'll help him realize that food in variety is a great thing. I think that they will require two bites this week. It sounds like ridiculously slow progress, but when they explain the psychology of it all, it makes sense to me. I am glad I am here, and I know that this program is definately the best for Benjamin.

I've Got My Game Face On

I'm now over my pity party, and am ready to go. I kept Ben home on Monday, so he would not spread anything, but he was climbing the walls, and making me crazy. We went outside to play for a while, and basked in the warm sunlight, something I miss while I sit in a hospital everyday. I also cleaned the room we stay in, did laundry, and cleaned the bathroom. Many of you know that my favorite chore is to clean bathrooms; it is great therapy for me. Having accomplished so much in a morning was somehow fulfilling, and just what I needed.

Today the clinic offered Ben a new food--pureed chickpeas in broth. He was not a happy camper about this at all. He shoved the cup away, declared that he wouldn't eat it, and that was that. He did take one bite, but gagged heartily on it. They were trying to see how much prompting he would need to get some bites down. He was able to get out of eating it today, but tomorrow he has a whole new thing coming. He will have to eat it. They will hold his spoon to his mouth until he takes the bite. They will gradually increase the number of bites required, then try a new food. I am truly looking forward to watching that go down in the morning.

This week I am enjoying the opportunity to meet so many people from around the world. I've met someone from Panama, and tonight I spoke with a family from Chile. Only the mom speaks English, and she began learning it when her daughter was diagnosed with her condition, and she realized that the best care would be here in America. They have made multiple trips to the US for treatment. I cannot imagine how difficult that would be to come to a foreign country to get medical help, when you have little or no resources, including language. She is a neat lady.

We have also been the recipients of wonderful acts of service. I am going to go buy thank you cards, because I am needing them in a big way. Today Ben received a beautiful quilt, handmade. He wrapped himself in it, then took a nap. He named it Charlie. He will be making the quilter a thank you card tomorrow, as it came with a name and address. It was donated through Project Linus. I feel truly blessed.

Sickies

Well, we've got the sickies today. Ben is just full-on sick, and I'm full-on homesick. We are quite the combo. Ben woke up with a headache, which is unusual, and he was crying for daddy. On a typical morning, he is bobbing around excitedly, getting ready for his day. He also felt warm to me when I was rubbing Vaseline into his dry, chapped hands. I asked him to lay down in bed, and he just wilted. I was going to go to church today, but I think I will just read my scriptures instead.

As for me, I thought I was too old to feel homesick. I thought I was way beyond that, but I'm clearly not. My tenth anniversary was last week, my good friend passed away, and my hubby told me some dear friends will be moving away in a few months. I miss my other kids. I know I need to just buck up, but being stuck in my room here is enabling the pity party to go on. Woe is me. I had to laugh yesterday when my mom asked me if anything was really making me happy. It reminded me of a survey the clinic gave me the day we started, which asked if "my last purchase made me happy." Yes, things still make me happy, I'm not that morose.

This is just one of those times I long to be home. I think the last trip to a feeding clinic (2006) felt better because I was staying with a friend's parents. They were a wonderful support to me, and gave me the feeling of having a home away from home. We miss "Lilla" and "Papa." I think things will get better when I can see my sis in a couple of weeks, after her vacation. Till then, I'm hanging in, and eating chocolate.

Before

I was thinking it would be good to post what meals are like before going through this feeding program. I have never been able to make any changes at home, on my own, so I am sincerely hoping that the change will be dramatic at the end of this.

At home, I found it useful to forecast the meal, so I would often let Ben know ahead of time that I was preparing his food, and that it would be time to eat soon. I would then prepare his food, which always consisted of purees. I usually puree ahead of time, because it is a time consuming process, and I hate it when I run out of them, especially on a Sunday morning when we are trying to get ready for church. I keep several meals worth of each food. I keep bananas, peaches, strawberries, pureed, and make really watery oatmeal from quick oats, and whole milk yogurt. Each of these foods need to be calorie boosted, as they are obviously low-cal. Because it is healthy and normal to get your fats from a variety of different sources, I rotate between canola oil (strawberries and peaches), coconut milk (bananas and yogurt), olive oil (soups at dinner), and butter (oatmeal and soups for dinner). Because these five foods are all that he eats, he gets a combination of four of them each day for breakfast and lunch. I present two foods at each meal. For dinner, I am tired of pureeing, so I buy soups that are smooth, and watery at Sprouts for Ben. These include tomato, butternut squash, potato, sweet potato, and curried lentil.

When we sit down at the table, I give him two bowls of food, about 4-5 oz. in each. I also give him a cup of whole milk, about 6-7 oz. He will do reasonably well eating the yogurt on his own, but everything else requires multiple prompts. I will remind him of the various steps necessary for successfully getting a bite of food into his mouth, i.e. pick up your spoon, get food on your spoon, lift your spoon up, put it into your mouth, take your bite. Sometimes it will require thirty or so prompts to get one bite in, and othertimes just a few. Either way, I'm stir crazy by the end of a meal.

As for his milk, he will choose the speed at which he will drink according to the motivation at hand. Sometimes he wants to drink it quickly because he wants to go play, or he wants to get on the school bus without it, and other times he dawdles. He will sit with the straw hanging out of his mouth so that he will give the appearance that he is drinking, but he is not. I'm onto him, though. Sometimes I can squeeze the cup to help him (and myself), but usually that will make him angry.

I have started feeding him about 90 minutes before he needs to be finished with a meal, because that is how long it takes for me to prompt him through a meal, and for him to be able to feed himself. He typically wants me to feed him, and truly dislikes having to feed himself. I push the issue because it is very age appropriate for him to be feeding himself at this point. Most 5 year olds simply refuse to be fed by an adult. By the time I have spent 4 1/2 hours a day feeding him, I am extremely frustrated, and on days I have to puree, I can count on another 1 1/2 hours of pureeing and mess clean-up.

Today his therapists are working on efficiency. Obviously that is a BIG problem. They offered him a chance to watch a preferred video for 15 minutes if he ate his food in 25 minutes. He did it in 17 minutes, and chose to watch Teenage Mutant Ninja Turtles. They set up a TV in the hallway just special for him, and he was all grins over that. I hope they can increase his speed, because that is one of his main issues that frustrates me. Since they are working on efficiency, they are not tackling a new food, and they do not want to push a new food too hard on a Friday. I think he will get a whole new plan next week. Bring it!

Faith

Yesterday, while moaning about the thick, flavorless oatmeal, Ben had an idea. He suggested that we say a prayer. I thought he meant a blessing on the food, but he had another idea. He prayed and asked Heavenly Father to "make his oatmeal good." I had to bite my lip, because I thought that was so cute, and really humorous. At the same time, I wasn't sure how he was going to react to the same oatmeal sitting there when he unfolded his arms, and opened his eyes. When he finally did, and when he took his nibble after, he angrily put the spoon back in the oatmeal and said "man, it didn't work." He looked very disgruntled. Sometimes I am amazed by my kids faith, and I know that I have plenty to learn from their pure hearts. I just hope that my lack of faith was not the limiting factor for Ben.

Day 2

Today we began with a weigh-in, for which I was late...don't get me started about the drivers here. We will begin each day with a weigh-in and a temperature. I think Ben lost a bit of weight yesterday, but hopefully we will make that up. His new feeding schedule is difficult to adjust to. He is in the second group of kids, otherwise known as the "late block."

After the weigh-in, we headed in for his feeding. This morning they wanted to give him an easy food, and a difficult food. I fed him, and his two therapists observed and kept records. They were watching our interactions, and how Ben and I would handle a food that he wouldn't eat. He was presented with Yo-Baby banana yogurt, a definate fave, and also very thick oatmeal. They really did not sweeten his oatmeal, which he is not used to. When I make it, it is very runny, and I use a big slice of butter, then sweeten it with organic sugar and agave nectar. Even though it is watery, it is seriously delish. He gobbled up his yogurt, but refused to eat the oatmeal. He tried stirring it, but could see that it was too thick. He insisted that I taste it before he did, so I ate a bite. It definately needed sugar. On the first bite, he gagged and threw up even before he got it into his mouth. I would submit that he needs behavioral psychology in a big way. In the end, he took another bite, which he strongly disliked, but kept it down. After the feeding, I discussed the way that I make his food, and suggested that they sweeten it to help him to be more successful.

Ben had occupational therapy today as well. His therapist seemed to be on top of things, and I think she will do a great job. She interviewed me, and asked me a lot of questions about him. We agreed that he needs a lot of work on his sensory issues. In OT, she will focus heavily on textures, and when she feels that he is ready to add some kind of texture, she will alert the feeding team, and they will begin to introduce that. In feeding, they will focus on volume and variety for now. That was interesting to me.

At lunch, they did not feed him, but his therapist presented different toys and movies to identify his favorites, and those which will provide the most motivation for him. When they were done, I went out into the hall and fed him some lunch. I thought they were going to feed him, so I was a bit disappointed, but it went well all the same.

Dinner was fed by them, and they gave him preferred foods. They wanted to see how he reacted to others feeding him, and he did very well with them. He is used to others, because he has had so many respite providers who have fed him. When he is fed here, one therapist feeds him while the other sits and documents every bite, gag, swallow, behavior ( i.e. screaming, hitting, refusing, escaping, throwing). That info is recorded, analyzed, and graphed, and then used to help create a plan for him. Who knew that eating could be so technical? I am grateful for the technical aspects of this treatment, and am banking on its success!

We Are Here!

We arrived after a whirlwind two weeks. I am pretty sure that my head is still spinning. Yesterday was our first day at the clinic. I thought that they would just be working Ben over, but let me assure you that I got it too, mainly in interviews by all of the departments that will be working with Ben. I was scheduled the whole day, and barely got a chance to scarf down lunch.

We began the day with vitals and a weigh-in. Ben also had a physical. During the physical, I was asked a bunch of questions regarding Ben's history. I was able to answer most of the questions, and was able to give a pretty good timeline, but had forgotten about some of the meds he has been on in the past. Once we discontinue a med, I usually put it out of my head, and focus on things that are more important at the time.

We then got a tour of the place, and found out where the different departments are. We met a lot of his therapists. There are many, and I am glad I am not going to be quizzed on names and faces.

I was asked to feed him lunch. His feeding therapist took me into the pantry to find some foods for him and my heart sank. I looked around and saw all things cornish. He has a corn allergy, and processed foods almost always have corn. There were shelves of processed food. I was told that they would have food for him, but I didn't see them, so my anxiety levels rose significantly, and I usually have almost no anxiety ever. If he happens to eat corn, he will have an eosiniphilic reaction which is a very painful thing, and this clinic time will be over. I've worked too hard to get here, and I don't want anything to mess this up. We finally found a can of fruit that he could have, and pureed that, and pureed a banana for him. They sat in the observation room and watched me feed him. They are doing baseline data, and trying to figure out where to start him in his treatment plan. He ate the food for me, but hated the bananas, which were not prepared the way I do. He says he does not like coconut milk, and it was conspicuously missing, and he noticed. He was nervous about their food, and made me taste it first. I don't like purees, but tasted it, and painted on a smile.

I had an appointment with the social worker. All parents here must see the social worker. She can be a liason with the community, and a listening ear. I usually don't need a listening ear--that is what my mom and sisters are for. All in all, I felt like I had seen a shrink, and was kind of humored by that.

For dinner, I fed Ben again. This time they pureed fruit cocktail and also canned green beans. Again, Ben insisted that I be the beefeater, which seems fair, as I cannot feed him something I am not willing to try myself. I tried the green beans first. I really love fresh green beans, but I can tolerate canned in a pinch if I have to. I have to say that pureed, canned, green beans are unreasonably nasty, and no one should have to be subjected to that. I tasted them, and could not paste on the smile, but I didn't die from eating them. It really would've been better if they would've added a big slice of butter, and some salt, but they were plain, and a bit cold...so I decided not to push Ben too hard with them. I managed to get him to try two bites of them which is more than I could do, so I considered our efforts a victory. He ate the fruit cocktail puree even though it was spiked with olive oil--I use canola.

I met with the nutritionist before leaving. I really liked her. She is spunky and fun. I explained what had happened with the food choices earlier, and she promised me that they would shop for Ben that evening, and be better prepared the next day. She also said that they take allergies very seriously and would not mess up. I left feeling better about that whole thing, and was ready to trust them again.

It was a very busy day, and I was looking forward to today, especially because I wouldn't have to feed Ben dinner. I am ready to hand over the responsibility for a while. I want to just enjoy Ben.

Plans are Complete, My Goals for Ben Listed!

We were up till midnight on Thursday making plans for this week. There were a few unknowns to work around, such as funeral details, but we hammered out most everything else. By Friday afternoon I was feeling calm, and ready to get packing.

I wanted to list my goals for our trip to the clinic. I have a few in mind. I know that last time we did an intensive feeding clinic, I thought Ben would come out eating pizza and regular foods. I did not know that they make the kids go back to purees, and work up from there. I did not realize that Ben's meager eating skills that he had before he was diagnosed with eosinophilic esophagitis were a use or lose set of skills. I now believe that when eating is completely unnatural to a person, they will lose those skills when there is a lengthy interruption, such as what happened when Ben had an NG tube, then G-tube. I don't begrudge the tube, it took him from being a failure to thrive child, to being on the growth charts for the first time in his life. I did celebrate when he finally reached twenty pounds at the age of 19 months. So, my goals for this stay are fairly simple, and I know not to expect him to be eating steak and potatoes when he is done.

1. Be more independent when self-feeding. (less prompts)

2. Eat a soft diet, and no more purees. (more age approriate)

3. Eat a balanced diet.

4. Be able to take in more calories naturally, and less from calorie-boosting.

That is about it. Simple. The hard part is getting him to achieve those goals. After the first couple days at the clinic, Ben will be given their plan of action. Hopefully my goals will match theirs, and they will know how to help Ben progress.

Rollercoaster Day!

Yesterday, when I woke up, I knew I would hear about our stay at the clinic. Every time the phone rang, I ran to pick it up and checked caller ID, but no dice. Still, I had a feeling. On the way home from parent-teacher conference, I stopped at the mailbox, and there it was...the letter. The letter was from the insurance company, and I quickly ripped open the envelope. It stated that they approved our 8 week stay! Woohoo! I was elated, to say the least. I would still need to talk with our contact at the clinic, but that was just what I needed.

This morning, I leaped out of bed early. I was too excited to sleep. My plan was to wait for a few hours to see if the clinic would call (because you know how I love that), and if I didn't get the call, then I would make the call. I waited for a bit, and then couldn't take it anymore. I called at about 10am, left a message, but got a return call surprisingly fast. My contact said that she had gotten confirmation from the insurance company, and was ready to set up a start date. We discussed March 1st, which is coming right up, but I figured I could pull that off, as I need to get help quickly. Then we discussed the transportation issue, and I will need a car there, so then things got complicated. Being an optimist, however, I felt I could work something out, as I am somewhat creative when I have to be.

I had just dropped off my oldest son at the orthodontist when I got a call that my grandma had passed away. I never saw that coming. I knew that she had been battling the flu, which is a mighty war to wage at the age of 92, but I would've never guessed that today she would go. I have mixed feelings about this. I am so very sad, and will miss her, but she is old, and her mind gave out quite a while ago. I am happy that she could graduate peacefully. My grandfather died in 1984, so I'm sure she had a blissful reunion with him. I am blessed with amazing friends and a wonderful home teacher who picked up my son from the ortho and brought him home for me. I went to be with my grandma for a while before the mortuary came to pick her up. It was a sweet time with her and my siblings.

So, it is a really good thing that I am creative. I have a funeral to work in before I leave for the clinic, and not a lot of time between each. We have brainstormed like crazy today, and plans have changed multiple times. So, who knows how it will all work out, but I look forward to starting on March 1st.

Really quickly, thank you in advance to all of my friends who have offered to help, and will help us during this time. 2 months is a very long time for me to leave my post as mother to 5. I am so grateful for my neighbors and my church family. This cannot be done without you.

I Love Surprises...Especially Calls!

I am one of those people who LOVE surprises. One of my favorite things is to know that I have surprised my husband, because sometimes that is difficult to do, and I will go out of my way to make sure I don't spoil things meant to be a surprise for me. A long time ago I peeked into my Christmas gifts under the tree, and I was so disillusioned when I finally got to open the gifts, that I decided to leave all future secrets just that. When I am caught unaware, I treasure the wonderment.

I waited a week and a half for the clinic to verify our benefits, and to put Ben's case together for the insurance company to review. I thought that was a long time, but I really want to get there, so I am not the most patient person right now. On Friday, my hubby suggested that I give the clinic a call to see how things were going, and to make sure Ben's file didn't get overlooked. I considered my options as I ate my breakfast, and decided that I really wanted the clinic to call me, and to just make my day. As I was dreaming of the way I wanted that call to play out, the phone rang. Startled, I grabbed the phone to check the caller ID, and was blown away to see that it was the clinic. Ben's file had just been faxed in to the insurance company. It will be followed by the point of contact for the whole process, and hopefully given the go-ahead! The clinic said it takes an average of about two weeks for the approval (thinking optimistically), and then we can go. I can't believe how quickly it is coming, and I look forward to a new adventure. That call was the amazing surprise I had hoped for.

Finally...a Call!

Today the clinic called, and they are ready to start our paperwork. Hooray! They will be verifying insurance benefits, and getting Ben's case put together for insurance's medical review and precert. I am hoping that this process takes less than two weeks, and then they will call me again as they send off the case to the insurance company. This renewed my hope that I could actually be there in March. It was difficult for me to contain my excitement today.

Still Waiting!

We are still waiting for a call from the clinic. I have explained things to Ben, and he, too, can hardly wait. Today he would not eat on his own. We are trying to promote self-feeding, but it is not going well. We feel that he is 5 years old, and is fully capable of picking up a spoon and feeding himself. It is age appropriate. So, we plunked him into his seat at the table at 8:15, and there he sat. He got up to go to the bathroom, and then sat again. I don't know who was more frustrated by the situation, Ben or us. He kept saying he was tired of being on the waiting list, and fussing. He only has 8 oz. of puree, and 6-7 oz. of milk to drink in a sitting, and it would take most of us only minutes to complete that, but it takes him hours. We left this afternoon at 4pm for our weekly date night, and he was still working on his lunch. He had all of his milk left, and about 3 oz. of puree. We do this everyday, and everyday is the same, unchanging monotony.
The wait list is killer!

I realized that when I go to the clinic, they will be feeding Ben all day for me, Monday through Friday. The beauty of that is that I can take Ben home at night, and simply enjoy him. I will not be under pressure to get a certain amount of food into him, and I won't have to feel the anger and frustration toward him that I usually feel. That would be pure bliss for me. Our relationship is so difficult and complex, if not downright painful.

There is hope!

On Wednesday, I spoke with one of the contacts at the clinic, and she gave me hope that this trip to the clinic may happen. I needed to know what I should do with our new insurance information, and I had questions about how the whole process would go. She told me that they would call me to let me know they were sending paperwork to the insurance company for review and authorization, and that the whole process has been streamlined at our new insurance company. The insurance even has a point of contact for the clinic. That is amazing! I have gone from little hope, to a whole new level of hope. I asked her for a ballpark estimate of the time when we might be able to go, and she said the list has changed quite a bit since we were there for our eval in the end of October, and she thought we could get into the program in the month of April almost for sure, and possibly the month of March. I can hardly wait!