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.