The Kanis Family

A few new words Benjamin has started to say lately:

- see ya
-Bible
-bath
- I thought he said Bob Builder but wasn't quite sure as it took me by surprise. I'll have to see if he says it again.

Yesterday morning he was whining and I said "What?" Then Benjamin said "book." It made me so proud that he actually asked for something. Then in the afternoon I asked him which video he wanted to watch- Songs, or Baby Signing Time and he said "Baby" so I put on Baby Signing Time & he was really happy. It seems like his speech is starting to come a bit more.

Last week we e-mailed the doctor at Children's who had recommended Benjamin go to an intensive feeding clinic to ask him to do some paperwork for MSP to get funding for Grand Rapids. After e-mailing back & forth he asked us to phone him. Through this conversation he found out that Benjamin has never had a swallow study done. So he wants us to get one done at Sunnyhill before we go further with the feeding program in Grand Rapids. We told him that Sunnyhill has had us on their waitlist for 2 years and that they had told us that Benjamin had to take 30ml by mouth before they could do a swallow study. Which is why we started working on the feeding clinic stuff. He said that they could do it and that he would head up the study since they can never get enough doctors to do it and that is why it takes so long. Apparently they can check if it is safe for Benjamin to eat by mouth through this study. If it is unsafe and we try to feed him by mouth we could be reducing his life expectancy since food would get in the lungs and cause aspiration pneumonia. So the feeding clinic is on hold for now.

However, I was talking to our SLP (speech pathologist) and she asked me if I had ever thought of putting different foods down the food for him to taste. My response- "Why would I do that since he can't taste it through the tube anyway?" Apparently approximately one hour after putting foods down the tube, our body processes it in such a way that Benjamin would taste the food. She told me that she had a friend who was working at Starbucks while studying to be a dietician. This older gentleman would come in every day and order a frapaccino with whip cream, let it cool down and then do something with it by his stomach. Finally she got the courage to ask him what he was doing. He told her that he had always loved that drink and now couldn't drink it so he put it down his tube so that over the next hour he could taste it. What a concept!!! So after we get the ok from Benjamin's dietician, we are going to try this.

The things we learn!!