Friday, May 25, 2012

The Sickness Continues

We don't have a lot of news to report.  Mikan is sick again with a new respiratory something or other; this time it has affected his eating, but I think the worst of it may be over.  

Next week Mikan will see a few specialists so we may have some news on the medical front.  

This week we visited a new neurologist who was pretty quick to recommend Botox injections for Mikan's tight gastroc muscle.  When I told her that he regularly sees a physiatrist who said Mikan was not spastic enough to justify Botox injections, she said she was fine with waiting four months to see his how he progresses.  I can see regular improvements in his walking, so I really don't think this will be necessary.

Below are a few pictures from the past week.

Mikan catching a ride in Sophia's new car.

Poppi teaching Mikan how to drive.

Mikan drawing numbers on our deck with a fly swatter stuck down the back of his pants.  Why?  Who knows.

Tuesday, May 15, 2012

Sleeping with Asia

Mikan no longer naps during the day in his bed, but he will regularly fall asleep in the car or bus on the way home from therapy or school in late afternoon, or sometimes he will lose consciousness on the couch while watching a DVD (next to a state, country, or continent, of course).

Mikan still hasn't kicked the respiratory illness he's been fighting the past week.  It may be turning into a sinus infection, I'm still not sure.  But he acts fine and is eating regularly (for him), so I'm not too worried yet.

I am most excited that he has begun to ask for juice regularly.  He will take about 4-5 ounces per day (without me asking or encouraging him), which is tremendous progress.  He starts an ABA program at the end of this week that also said they could work on our feeding goals with him.

I initially thought the ABA-style feeding therapy program directly conflicted with the strategies we've been using over the past 2 years (food chaining, no external motivators, following Mikan's lead, etc.); however, when I gave the program director a list of things we did and didn't do in relation to Mikan's feeding and provided her a thorough explanation of our demands, she acted like this was not a problem, and that our strategies didn't contradict their program.  We will still approach this issue cautiously, especially since we are hoping Mikan will get his g-tube out next month, and we don't want to jeopardize his progress.

Monday, May 7, 2012


Practicing his swing

We had another weekend of illnesses-this time runny noses, congestion, and coughing all around.  Fortunately, Mikan's oral intake has remained stable-perhaps a first.  He hasn't been sleeping well though, which means neither have John or I.  This morning he work up at 5:30.

Small Breakthrough of the Week:
Last night after I finished reading Mikan his bedtime books, he was staring into space and drinking his milk.  After several seconds of silence, he started giggling.  This was our conversation:
M=Mikan's dialogue

"What's so funny?"
No response.
"What are you thinking about?"
M: "Anica." (She wasn't in the house at the time.)
"Is Anica a funny girl?"
M: "Yes."
"What does she do that's funny?"
No reply.
"Remember that time when she put her blanket on her head?"
More giggling.
"That was funny, wasn't it?"
M: "And she talks."
"Does she say funny things?"
M: "Yes"
"Like what?"
M: "Like Peas." (This is how Anica says "please.")

Then we went back and forth exchanging different variations of words that Anica says and mimicking the funny way she says them.  This may sound like a simple story, but it really seemed profound to me, so I began trying to dissect why.  I think it is because Mikan only initiates conversations about things he wants, things he observes, or numbers.  But last night he was thinking about not just one event, but a series of things his sister does (and she wasn't even in the room, in other words, he didn't just observe her saying them). 

Several weeks ago, Mikan was riding with one of his cousins (also 4 years-old) in a wagon to the park when I caught a glimpse of what his social future may look like.  His cousin said "We're going to the park." and Mikan replied "We're going to New Mexico."  His cousin looked at him funny and said "No, Mikan, we're going to the park."  Mikan responded, "We're going to New Mexico!"  Then Mikan continued to repeat "We're going to New Mexico!" and  "We're almost to New Mexico!" for a few blocks after which his cousin said, "Ok, stop, you're freaking me out." 

I did have to laugh though when we got to the park and his cousin asked Mikan "What's a New Mexico?"

But Mikan's language skills are improving, and I see hope for appropriate peer socialization in the future. 

Wednesday, May 2, 2012

Fun Stuff

This week we are recovering from a weekend of kid vomiting and diarrhea. I was happy to get it over with at the same time though. They both acted completely normal the entire time.
Lunch this week. Can you guess what he ate? Yep, the potato sticks and chips. He liked putting together the sandwich puzzle though. Then he handed it off to Anica to eat.
This was the day he decided he wanted to eat in a box.
Can you guess what he wrote? Answer below.