I got my laptop to work again, or should I say that my husband did. I can post pictures now so I am excited about that. Santa came to the clinic a couple of weeks ago, but Ben did not like him. He refused to look at him. I thought it was funny. Santa came to see the children on the day that the Kiwanis Club provided Christmas for the feeding kids and for the inpatient unit kids. Again, I was touched by their generosity.

This weekend we were feeding Ben orally. We had specific goals to meet each day in order to avoid a tube feeding. We met these goals yesterday and today. It was very difficult to schedule these in with our busy weekend, and I found that I got frustrated by the situation. Since my family has arrived and we went away for the weekend, it was chaotic to work in Ben's needs and everyone elses'. It was good to go through weekend so that tomorrow we can discuss some of the problems we encountered, and come up with some remedies. It was a wonderful treat to not have to do tube feedings.

This morning Ben did not want to drink. He tried every stunt he could think of to avoid it. He bit the straw, blocked it with his tongue, spit it out, moved his head back, turned his head away, hit me, and screamed. I felt myself getting so angry. He did well eating from the spooon, and gagged and spit up only a couple times, but drinking just wasn't his thing. I try not to think about how long the road ahead is...it is too overwhelming.

Friday I changed his button out. His anti-reflux valve broke so that every time I opened the lid on his button, it leaked out what was in his tummy....yuck! I was proud of this accomplishment and feel like I can do it again with more confidence. I also burned off some of his granulation tissue that had grown under the button. I used the silver nitrate sticks. Those are amazing. Ben was very upset, and it was a rough way to start that day. He goes through so much. I often wish he didn't have to endure some of the things he does, and I wish I could take that away from him. I hate to see him suffer. He is one tough little guy.

Catching Up

I haven't blogged in a week or so, and I need to catch up. Ben has completely gotten over his cold, and is back to making progress. His food volumes have increased, as well as his variety. He has gained back what he lost from being so sick. He continues to be the happiest kid here, and the staff loves his enthusiasm.

I am amazed at what the clinic purees. I think I will just have to think out of the box. Some of the interesting items have been pureed eggs, cantalope, and asparagus. Sometimes I find it difficult to feed him because the food smells to me, like the asparagus and peas. I like those foods myself, just not pureed.

Seeing how long the road is for Ben is overwhelming. The fact that chewing continues to be a complete mystery is troubling, but he is willing to try now. He has no connection between feeling hungry, and knowing how to satisfy that. He appears not to feel hungry at all. Meals will have to be scheduled and structured for a long time. His feeding therapist says that connection often comes down the road, and I truly hope that is the case. I hope he reaches a point in his life in which food finally brings him pleasure.

The Long Haul

I am learning that this process of eating will require me to be working with Ben for the long haul. There is no quick fix for him. His therapist estimates that he has the feeding skills of a 6-9 mo. old. He does not have a clue how to chew. I was initially hoping that Ben would be able to eat something more than purees when he left here, but I can see that will not be the case. He did tolerate grit in his food yesterday. Bread crumbs were added, and although soggy, they still gave some texture to his food. I still hope we can approach 3rd stage baby foods soon, but that may be a very lofty goal. We are doing different massages on his gums and cheeks, and some exercises to teach his tongue to move back and forth. He is also using a chewy tube to learn to bite on. These exercises are done at the beginning of each feeding. I went in to learn to do those today, but want to practice some more. My presence in the room threw him off again.

A couple of days ago, one of the psychs here told me about a study being done at Kennedy-Kreiger Institute in Baltimore. She explained that they thought maybe the hunger/satiation area of the brain was possibly underdeveloped in some of these non-eating kids. That area is supposed to be in the cerebellum. That reminded me that Ben had a small gap in one area of his cerebellum when I was pregnant with him. Also, the fact that he hasn't really ever been moved by hunger in his life makes me think that he may have that situation in his brain. I am hoping to find out more about the study soon. It would change the way I look at things I think.

On a good note, Ben ate well yesterday. He threw up in his first feeding, but they gave him pureed tomato, pasta, and rice. I think I might have the same reaction if I was given that for breakfast. I suggested easing him into the day with more breakfast like foods. He kept the rest of his meals down, and is back to taking larger volumes again. Yee-haw!

The Kiwanis Club also came yesterday and provided Christmas for the inpatient kids, and day patient feeding kids. I was still reeling from his sad first feeding, and the fact that the hunger/satiation area of his brain may not be working right, but found that my attitude changed when I was overwhelmed by their generosity. I was amazed by the toys they gave Ben. I have learned a lot about the difference generosity and service can make in the lives of others. I hope I can pay that forward sometime soon.

Tough Stuff

Today we are back in action at the clinic. Ben did well at his first feeding, and ate a whopping 6.8 oz. I was hoping we were on our way to bigger and better things until he had his second feeding. He gagged and spit up quite a few times. I feel so discouraged. I don't think I could feel more frustrated than this. His therapist said that he definately has some significant delays in oral-motor development and skills. Since he only eats purees, and does not do that well, I would agree.
In the weekly conference today, we discussed his discharge date. I suggested that I wanted to see Ben leave eating more than just purees. If the pureed food had some small texture to it, it would be great. At the beginning of this year I had Ben eating stage 3 baby foods. I know he can get there again with some work. The team seemed open to that possibility. I want to make sure that I am communicating clearly with them, because if I don't push for things, I feel like they won't happen. They have made progress with Ben since he will accept food, but I think they are content to end with purees. I think Ben is capable of more. We'll see how it goes. I did appreciate the fact that the team was open minded.

Downward Spiral

This week was loaded with setbacks. The case manager warned me that the we would hit bumps in the road, but being an optimist, and seeing Ben take off in amazing ways, made me think we would continue to make big gains. Sadly, he was right. Ben's cold has done bad things to him. He has been very congested, and it seems to be making him throw up. He has been throwing up all week. Yesterday he threw up so much during one feeding, that they are considering the possibility of motility issues. Thankfully, the pediatrician at the clinic is not into drugging a kid unless he has to, and is taking the wait and see approach. We will see how Monday goes for Ben. This morning I think he did not feel well, and he proceeded to throw up some of the overnight feeding I had given. That is so unlike Ben. The clinic had warned that some kids pick up the habit of vomitting from situations like these. I am so hoping that does not happen to Ben. I feel like I am watching all the the progress we had made slip through my fingers like sand. I sure hope that next week brings good news because I don't know if I can handle another week like this one.