I have been wanting to post Ben's pics on his blog. He is in the "boy's club" in this one. Believe me, this is not his usual expression on his face when we go into the laundry room to eat, but this would make a good advertisement for it. He makes it look like such a happy place. I tried to take a picture of both of them, but I couldn't get Ben and his twin to sit still long enough to get a shot.
Ben has been doing well eating. He has thrown up a few times in the last few days, but is still able to get nearly 11 oz. down in atleast 2 separate feedings. Dan has been sick with a cough and a fever, so I'm sure it is only a matter of time before Ben gets it. A cough is lethal for Ben's eating progress. It is a sure way to start the vomitting. I hope he won't get it, but I don't see how he will avoid it. Danny loves to be with Ben in the laundry room when Ben finishes a meal. They sit very close.


Ben does not use bowls for eating, but loves to wear them for hats. On the night I took this pic, I happened to walk by and saw him watching a movie in the club with the bowl on his head. LOL!

Pump Up the Volume!

Ben has been healthy for a few weeks and is doing well. He has pulled a few tricks the last couple of days, but when we stick to the protocol, he realizes quickly that we won't buy that anymore. It does crack me up a bit when I call to him and tell him to come for "sips and bites," and he hangs his head and slouches his shoulders, and shuffles slowly into our laundry room. We call that "loping." He strongly dislikes eating.
Some may wonder why he would be walking to the laundry room. We have tried feeding him in the kitchen while we are eating as a family, and he is not ready for that. He brings out his finest bag of tricks when we try to do both things at once, so we pull up a chair at the dinner table for him to sit on if he wants, but do all of his feedings in the laundry room. He is less likely to be distracted in there, and less likely to get attention for bad behavior. We keep his high chair in there and a chair for us, and a TV/DVD combo. We have a drawer full of his feeding therapy items. It is odd, but it works.
I have been able to increase his volumes this last week. He has been free of a cold or any other illness, which is premium time to make some serious headway. My record for the week is 10.5 oz. I am able to get atleast 9 oz. in on a regular basis. My babysitter and husband have a hard time getting the same results, but I think that will come as Ben gets used to taking more volume. I am feeling a bit more encouraged when I see progress being made like that. This whole eating thing is quite the rollercoaster, but I like being up on top right now.
One more thing about the laundry room...Ben's twin, Dan, loves to go into there when Ben is done eating. We have Ben sit in his high chair to digest a bit before getting out to run amuck. Dan calls it the "key pub," which being interpretted is "boy's club." The "boy's club" earned its name when we would walk by the laundry room to check on them, and they would wave goodbye, then shut the door so that we could not go in. The rest of us are officially uninvited. I think it is neat that Dan gets so excited about spending that time with Ben in their own boy's club, one of the joys of twins.

Ben has been doing well eating. He is taking about 8 oz. of food and we feed him 4 times a day. We get 2 meals in before his nap and 2 meals after. He is stuck at 8 oz. and we are having a difficult time moving beyond that, but I do hope we can soon. More volume in a meal means less meals that have to be fed. Ideally, he would eat 11-12 oz. 3 times a day, but that seems like it is light years away. If we go over 8 oz. right now, he will throw up, so I try not to push it too much. I get very discouraged when he throws up everything I worked so hard to put into him.

To add something new, I thought I'd write a few of the things he eats. As I had said before in one of my posts, I just have to think out of the box a bit. I would have never thought to do this before. As I have been preparing his foods, I have learned a lot through trial and error. Some things just shouldn't be pureed, and some things work really well. Ben's food must be pureed like second stage baby food. Lumps will make him gag and throw up. My older kids get a kick out of Ben's menu, and the appearance of his pureed food. All in all, he has a fairly balanced diet I think, actually better than my other kids.
Breakfast
Eggs and ham, oatmeal, rice cereal, strawberries, blackberries, yogurt, pears, applesauce

Lunch and dinner
Asparagus and potatoes, sweet potatoes, carrots, ham, chicken and applesauce, chicken and pears, rice pasta and marinara sauce, ham and northern beans, beans and marina sauce

Tips and lessons learned the hard way
Rice pasta goes a very, very, very long way
Rice pasta gets very gelatinous
Blackberries must be strained, they're seedy
Asparagus must be strained in a larger mesh strainer, it has fibrous strings
Water, water, water-- successful pureeing requires a lot of liquid (if milk can be used, use it and add the calories)
Cheese does not puree well, I don't recommend it
Use a variety of things to boost (add calories) i.e. olive oil, canola oil, butter, coconut milk, sugar, maple syrup
Pureeing takes a lot of time and planning!

Monday, January 22, 2007

I can't believe it has been so long since I have last posted. Time flies by when I am too busy. Now that I am home and trying to maintain my house, take care of all of my children, and dealing with the many things I have to do for Ben, my days disappear at light speed. Being away from home, such as it was, was like being on a strange vacation.

As for Mr. Ben....Ben has gone through 2 colds since being home. Each time he gets one, he begins to vomit a lot during meals. Yesterday he threw up 3 times during his meal, and twice after. I was trying to get my kids out the door to go to church, and I looked at him in his high chair, and he was gagging like crazy, and for no apparent reason. He finally threw up whatever small amount might have been left in his tummy. That was a very bad way to start the day. I went to church feeling crabby and frustrated.

Because Ben had been throwing up so much, we decided to try a few different things. We took the dairy based yogurt out of his menus and switched to soy based. I don't think that has made a difference. We also have been thinning his food out quite a bit, and I feel like that has made a big difference for him. Today I tried pushing the solids at the beginning of his meal, and gave more formula at the end. That seemed to work very well. As he gets full, it takes precious little to push him over the edge and to cause him to vomit, but drinking doesn't do that. I figure I got about 9 oz. down him at that meal. I was quite proud.

One big problem was that the dietician at the clinic had given us contradicting instructions for boosting his food. Boosting means adding calories. We have a couple handouts that she had made for Ben in which she said to boost with 1 Tbsp. per 4 oz. That was creating a huge oil slick in his food. Another handout said to use 1 tsp. per 4 oz., and also had a statement about how over boosting can cause reflux. I was not happy when I saw that discrepancy. I had been using a tablespoon to boost with, and as soon as I changed to the smaller amount, he improved. I think the food slipped up just as easily as it slipped down when it had too much oil in it. That was such a big setback for him to have to go through that, not to mention what it did for us. I was not happy when I figured this out. I expected more of the professionals that were responsible for Ben's care.

Today was a good day for Ben. He kept his meals down. I pureed scrambled eggs and ham for him, and added butter and maple sugar to it. He also had soy yogurt boosted with coconut milk. For lunch and dinner he had chicken mixed with pears, and sweet potatoes. I used olive oil and butter to boost those. I try to vary the sources of fat that I boost with. He is fed 4 times a day, and my goal at each meal is 8 oz. I do hope we can break that barrier soon, as 8 oz. seems to be his max. More food equals less feedings. Each feeding is about 30 min. and must be done in our laundry room, or he is too distracted to eat, and pulls out some really bad behaviors. I long for the time when he realizes, on his own, that he must eat, and can feed himself. I think that is a very long way off in the far distant future.

Really Catching up!

Our family arrived home last week. We drove across the country, and it took us 7 days. We did stop in Louisiana to spend Christmas with my in-laws, and that was a great way to break up the trip. As we began to drive, I couldn't help asking myself what would've made me want to drive that far with 5 children, 2 of whom are 2 yr. old twins. Bad idea. I am, however, so glad to be home in one piece, and out of the van.

As for Ben.........
He graduated on Dec. 22nd from the program. He had been off of the feeding tube for a few days. We were doing 5 meals a day that were highly structured, and we had to follow a certain protocol. He was still throwing up some at the end of meals, but was doing pretty well. On Friday night, as we were getting to our hotel, he threw up all over himself and me. I was crammed into the back of the van next to him, and it was a mess. I had fought hard to get that into him, and all of my hard work was then running down his carseat and my clothes. He should have been tube fed probably, but doing that and preparing his oral foods on the road was too much. He proceeded to do the same thing the next night. That time he missed me, but got my sweet 10 yr. old son, who handled it in stride. I was not able to do the protocol in the van, and considered it lucky to get him fed at all. Many times he threw up what we fed him. We weren't sure if he did not like the baby food I had gotten for him, or if he was refluxing, or if it was behavioral. So hard to tell. We put food into his mouth and hope that it stays down. I long for the day when we can feed him and not fear vomitting with every bite.

One day on the trip, I was cutting some bananas for Ben's twin, who does not have any of the feeding problems that Ben has. Ben wanted a piece of banana, so I cut about an eighth of a slice for him. He took it, put it into his mouth, and then looked at me like "what on earth do I do now?" This was a striking moment. I realized how far we had to go before Ben could eat like the rest of us do. He just does not get it. It is like Mother Nature quit a bit too soon on Ben. It must be frustrating for him to be learning that he needs to eat, but then not having the skills to do that. It is very sad.

Once home, he pulled some very special tricks on us. The therapists warned us this would happen, and boy, did it ever. He decided he wouldn't eat at all. He turned his head, pursed his lips, spit out the microscopic amounts of food that somehow made it into his mouth. 20 minute meals were stretching into 90 minute meals. I was in tears a few times. I asked my husband to install a punching bag on the patio as a safer way for me to vent my frustrations. I felt like I had just wasted 8 weeks of my life, not to mention the many activities I had missed during last year to take him to his plethora o' appointments and therapies. I called the clinic and they were very helpful. We agreed to cut the feeding times back to 5-8 minutes, only give him favorite foods, and to tube feed at night for a few days. So far this is working and hopefully we can fade other foods back into his diet in a few days, and extend the time back to 20 minutes. It is misery going back to tube feeding, and disappointing, but he is responding well to this plan.

Today we met with his neurologist to review the MRI results that we got just 2 days into the program. He explained the damage in the temporal lobes, and said he had a "smallish" cerebellum. I wondered if that was a term used in med school, and it made me want to laugh out loud. He felt like that could possibly explain the feeding disorders Ben has had. He did say that in his practice over the years, he has had other patients, who like Ben, don't eat. He said that on average, they do begin to eat at the age of 4 or 5. Some kids later, but that was about the average. This gave me so much hope. If I know there is a possible end in sight, it makes the bumps in the road so much more bearable. The doc seemed happy with the progress that Ben has made inspite of the damage that has happened in his brain. He will follow Ben with some more MRIs to rule out the possibility of a low grade tumor near one of the temporal cysts.

Now that we are home and things are settling down, I can be more attentive to the blog. I tried to keep it up at the clinic, but once my family arrived, time was something I couldn't find. I have a long to-do list from the clinic, but I have some contacts that can guide me through. I am hoping and praying that Ben can get this eating thing figured out.