Monday, October 31, 2011
This year Mikan was interested in the novelty of walking up to random houses we'd never visited before. He still didn't care much for the candy, but he he enjoyed reading the packages. When we walked close to the library, he was done trick-or-treating and just wanted to go play at the library. So that's what we did.
Mikan visited a GI specialist in Chicago last week (coauthor of Food Chaining that I've recently read). He also met with a new dietician, speech therapist, and occupational therapist. The newest reccommendations were to stop all fluids through the g-tube. Because Mikan had been having difficulty taking enough fluid in, we had been g-tubing about 15 ounces of water per day. We are switching back to regular 1.0 Pediasure and stopping all water. Mikan will have to do it all on his own. The doc said that Mikan has a history of drinking Pediasure well, so we need to push him more to be thirsty. Mikan doesn't drink anything except Pediasure excluding a few token sips of something here and there, so we are hoping that his Pediasure intake will increase with the water elimination. The dietician also said that it is common that once a g-tube is removed, it will take a child up to a year to find his/her normal growth curve. Mikan may lose weight and gain and lose again for up to a year before his growth is steady. Because we feed him what we assume he needs, we never really know for sure what his growing threshhold is. The doc also wants us to keep food chaining and set up opportunities for Mikan to be interested in food and/or eating. He wants Mikan to be intrinsically motivated to eat. He told us to not even ask him to eat anything or urge him to do something he doesn't want to with food before he gets to eat something he wants. No external rewards. I think we've been doing a pretty good job of this so far, but it is helpful to be reminded.
He said that he didn't want to reccommend removing the tube during the winter, but Mikan has a good chance of getting it out next spring/summer. When I pictured Mikan getting his tube removed, I imagined him eating a lot more than dry crunchy foods and milk, but I've come to understand that this is a long process. And my understanding of "long process" has shifted as well.
Mikan's gross motor has been steadily improving though. This weekend we saw him for the first time stand up on his own from the middle of the room without using any furniture! He wants to walk everywhere and rarely crawls unless he doesn't have his AFOs and shoes on. He still has a classic ataxic gait, usually with his feet wide apart and his hands up high to help balance. I think people who don't see him walk a lot would feel like they needed to follow him around with pillows, but we are used to him falling. He's tough.
Posted by John and Jenna Gensic at 3:08 PM