Monday, October 31, 2011

Happy Halloween 2011

Happy Halloween!

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.

Wednesday, October 26, 2011

OOOOOO Come On, Come On, Come On

Mikan and Anica often get a little too close for Mikan's comfort. When this happens, Mikan often urgently says, "OOOOOOO Come on, come on, come on, come on"
He assumes Anica knows what she ought to be doing.

We are wondering where he learned this expression from. I'm sure I've said it before, but we're not exactly sure where it is coming from. However, I like to see more and more of Mikan's personality coming through.

Tuesday, October 18, 2011

Therapeutic Listening

Mikan is trying therapeutic listening in the home. We rented special therapeutic headphones from his OT. Twice a day for thirty minutes, Mikan listens to modified songs that are aimed at regulating his sensory system. The brochure we were given states that "By providing precise input simultaneously to both ends of the vestibular-cochlear continuum, Therapeutic Listening can have a positive impact on sensory function and on the nervous system as a whole." "[those who use this technique are] better able to orient and attend to salient sensory information and regulate physiological states. Having a solid foundation in these important skills then frees up valuable cortical resources for connection, engagement, communication, new learning, and other higher level skills."

The CD sounds pretty normal except for a few scratching/skipping sounds periodically. Mikan loves listening to it. It relaxes him and helps him focus. We are supposed to trial this technique for three months, possibly longer.

On the nutrition front, Mikan lost a pound over the last two months, so his developmental pediatrician wants us to push for more ounces of Pediasure. It is very difficult to both allow him to get hungry and manage his own appetite by avoiding the g-tube, and then making sure he is getting enough to gain weight. I am hoping this is a result of his recent sicknesses and only a temporary setback. His oral intake is still limited, but at least he is eating regularly.

Over the weekend Mikan enjoyed a cider pressing party at Grandma and Grandpa's and a baptism for his "aunt" Sophia. Mikan did great in church. He was reciting a few states and capitals for any parishoners who needed a review, but we didn't have any major meltdowns.

On a different note, John has just developed a Biology study app called Bio on the Go that is now available in the app store. He has been working very hard on this for the past year. Click on the sidebar button to check it out.

Saturday, October 8, 2011

Autumn 2011

We ordered this Ikea swing for Mikan's sensory therapy. He participates in several 20-30 minute circuits each day to help organize his sensory system. Swinging is one of the steps in his circuit. Now that the weather is turning colder, taking him to the park isn't as convenient. We chose this swing since it was reccommended by his therapist. It cost less than $50 on Amazon. Compare that to the $400 price tag on most therapy swings. We bought hardware that allows the swing to spin as well. Mikan loves it. I think it will get plenty of use this winter.

Mikan completely enthralled with Handy Manny. I think he's learning how to fix a blackout right now.

Anica enjoying fall.

Mikan's "ouchies" seem to be on the mend. I think we are just beginning a long list of school/winter illnesses though. We're lucky Mikan is so tough.

Pumpkin patch trip

Tuesday, October 4, 2011


Mikan has had a barrage of minor illnesses ever since school has started. Runny noses. Diarrhea. Fever and vomiting. Fungal rash around the g-tube. Athlete's foot?

Mikan's toes have blisters all over them. They are very painful. We have been trying to keep his braces and shoes off as often as possible and use a prescription antifungal cream. Of course this means he can't walk, which is frustrating for him. His PT said this is common for kids who wear AFOs because they sweat so much.

Despite all of his "ouchies" as he calls them, he is still good-tempered. He even asks that I sing a song about his "ouchies" before he goes to bed at night. I'm not really sure what he expects me to sing about, perhaps he just wants to remind me that he has them. He also adds to his nighttime prayers now "no more ouchies."