Tuesday, September 27, 2011

Juu Cookie

Mikan visited his eye doctor today. His prescription has gotten slightly stronger. The doctor says this is typical and it may even be that because Mikan is older and tolerates the exam better, the doctor can accurately assess Mikan's visual needs rather than evidence of a worsening condition. He said Mikan's near vision is being corrected well, so this will hopefully translate into an ability to drive later on (You need to be at least 20/50 to drive); however, he was cautious to predict anything for certain.

Mikan's obsession with finding letters and numbers in anything seems to be a little worse lately. I'm not sure what is triggering it, but we are trying to redirect his attention. I thought his perseverations were lessening, but this past week has given me my doubts.

On the bright side, Mikan's walking is continuing to improve. He still falls a lot and needs to have his hands high in the air to balance, but he tries hard and prefers to walk now instead of crawl. He's getting there!

Below is a picture of the cookie Mikan wanted to make last week. He wanted the number ten. Or, as he requested in Japanese "juu!"

Also, congratulations go to John for being named a Jacobs Educator for the Indiana University School of Education. He recently won this award for innovative and engaging use of technology in the classroom. Here is the link to the article from our local paper.

Thursday, September 15, 2011

Allergies, Pee, Poop, Rain, and Japanese

Last week Mikan was tested for several different seasonal and environmental allergies. Everything came back negative. I was trying to get a picture of his back where all of the poking was done since I thought he would be interested that there was an 'A,' 'B,' and 'C' written there, but he wouldn't stay still, so I took a video. I think he's officially turned into a boy with his obsession with the words "pee" and "poop." See the video below.

Immediately after this, I took him into the bathroom for his bath. I took his diaper off and turned to fill the tub. Then I heard him say, "Uh oh. Mikan peed on the rug." I turned around to see him pointing at a fresh wet spot on the bath mat. He ignored my scolding,pointed to it, and said "Alaska!" It was kind of shaped like Alaska.

Good news updates:

1. Mikan's eating has really turned a corner (for now at least). He ate a piece of chocolate and an apple pie stick from Springhope Farm this week.

2. Even though he has decided to ditch a nap at home, he is also slowing ditching his grouchiness in the evenings.

3. Notre Dame beat Michigan State.

4. Mikan is learning to count to twenty in Japanese. Thank you YouTube.

Monday, September 12, 2011

Hungry Boy

Well the stars have aligned. God has answered some prayers. Or maybe Mikan just hates the soy milk we've been offering lately. But something has kick-started Mikan's appetite for solids. He's been shoveling in cereals, goldfish, Chex-Mix, pretzels, and popcorn like he's been doing it his whole life. Consequently, he has refused his milk, and we've had to use his g-tube pretty regularly. However, we don't mind since this interest in food is something we've been working on all year.

We've started a "Yummy Yucky" chart at home. Mikan tastes a food and then labels it as "yummy" or "yucky." Then we put a picture of the food on a chart under the appropriate label. He's been so interested in the chart that he has even tried some foods just to label them as "yucky." The goal is that, with repeated exposure, he will eventually give yucky foods a better rating. It is a strategy from a book called Food Chaining that I recently read.

There are so many variables that affect Mikan's behavior every day that it exhausts me to even speculate sometimes. I don't know why he started eating. There are many possible reasons. All I know is that I will continue to thank God every day for Mikan's progress and pray for the wisdom to help him in the areas in which he struggles.

After a follow-up visit with the GI doc, we learned that Mikan has no lactose allergies or signs of reflux.

This past weekend Mikan attended his first wedding and reception (My godfather's daughter). He loved swimming at Nina and Poppi's hotel between the wedding and reception and dancing with the Irish band later that night.

Mikan enjoying some zoo time before his GI appointment.

Sunday, September 4, 2011

Developmental Pediatrician and Psychologist Update

Last week Mikan had an informal evaluation with a pediatric psychologist. She told us that Mikan has some behaviors that are "concerning." However, because of his age, the multiple possible variables contributing to his delays, and the great network of therapies he already has in place, she said it didn't make since to diagnose him with anything just yet. A diagnosis wouldn't provide any new therapies for him at his age, and perhaps a little more time would help eliminate some variables. The behaviors she was concerned with were:

1) His limited eye contact
2) His preoccupation with letters and numbers in a toy she gave him and his inability to reciprocate a conversation for more than a few exchanges without reverting back to talking about a letter or number.
3) The fact that he doesn't try to get our attention to show us things that often. He talks to himself more instead.

These are all behaviors we are already aware of; however, we can't help but recognize how much more severe each of these behaviors was 8-10 months ago. He has come a long way, and we are cetain he will continue to make progress.

In the interview, John asked the psychologist, "Couldn't his interest in letters be evidence he might become the greatest writer ever?" She humored him and admitted it was possible.

So the psychologist wants to wait until he finishes the school year, and then she will complete a formal comprehensive evaluation to see whether or not he falls somewhere on the spectrum. We are convinced that if he does fall on the spectrum, his placement will be mild.

Next week we get the results from his esophagus biopsies. We are also visiting an allergist.

Mikan's teacher said she would like to move him up into the inclusion classroom, the "highest" level for his age group. One of his therapists joked that a kindergarten classroom would really be more appropriate for him if it weren't for his delayed social skills.

Finally, his developmental pediatrician did not agree that Mikan should go without the g-tube. She doesn't mind if he is on a mostly liquid diet; however, she did say it isn't wise to remove it at a point when he appears to be in the middle of a major regression. She wants to see evidence of lasting oral feeding skills before she is comfortable removing it. This makes sense to us too.

His overall fluid intake lately has been down too, so we've needed to use the tube for water. I hope he's not planning a hunger strike until Notre Dame wins their first game.