Thursday, January 26, 2012

More Testing and Mikan's Free Time Continued...

Mikan's developmental psychologist's office called to schedule his next visit. He will see her in early February. At this appointment, he will udergo formal Autism Spectrum testing. We've been told for the past three years that he has exhibited signs of being on the mild end of "the spectrum." I'm training myself to fully anticipate a PDD or Asperger's diagnosis so that at the least I can be prepared or pleasantly suprised after the visit. I'm gradually coming to the conclusion that the label won't change anything about him or our relationship with him. As he gets older, if his social skills don't improve, he may have the opportunity to participate in behavior therapy with a diagnosis. Or maybe we can teach him to count cards, and we'll take him to Vegas.

On the lighter side...Here are some activities Mikan has completed this week.

(It says "Bats are for playing." His English teacher mom is proud of the punctuation at the end of his sentence.)

I must admit that he did ask me to help him spell "Pierre."

When Mikan asked to put Anica's barrett in his hair, I decided it was time to cut the winter wool.

Saturday, January 21, 2012

Apple Week

We are trying a new feeding strategy with Mikan called Food Academics. We basically set up mini-lesson plans about a particular food over the course of a week. He will learn about the food related to our five senses, manipulate and play with it, create projects with it, read about it, and, hopefully, evenually kiss, lick, or even eat a little bit of it. This week was apple week. Although he never ate any apple, he enjoyed playing with it. I am going to take pictures of the different activities he completes and create mini-books about the week for him to look back at, hopefully generating more interest in interacting with that food in the future. Below are a few pictures from this week.

Another MAJOR milestone. Mikan is drinking from a different cup. As you can see by the last picture, it really isn't that different from his old cup, but this is still a HUGE improvement. In the past, he has refused anything that wasn't from his special cup. Yesterday morning we started with this refusal. I told him his other cup was broken. I wanted to see how long he would hold out, or if, in fact, he would starve himself and I would need to use the g-tube that evening. He began by throwing the cup across the kitchen, but he started eating more cereal. By the afternoon I was getting nervous because he still hadn't drank anything. I finally told him that if he wanted to watch Dora, he needed to take three sips from his cup. He finally caved and drank one sip, then told me he wanted to count in Spanish while he drank. We counted to "diez" and he finally realized that he was able to drink comfortably from it. We haven't had any problems since. I'm not sure this was the most therepuetically appropriate approach, but I am pleased with his low level of anxiety with this new introduction. My plan is to slowly introduce more cups and then return to working on different liquids.

Wednesday, January 18, 2012

Wordless Wednesday

Tuesday, January 10, 2012

Pooping, Peabody, and Progress

Mikan pooped for the first time on the potty! But the only reason he did was because I saw him straining so hard and I took him to the bathroom in time. In the past, we've never known until he was finished. Unfortunately, ever since we stopped using his g-tube, his bowels have suffered. He sees his nutritionist again next week for a weight check. I am praying he gains weight, because his pooping problems combined with another weight loss won't help our efforts to ditch the g-tube. His solid eating remains dismal. Pringles and cereal to be exact. But he is interested in other foods, so we are trying to take advantage of this and provide him with new experiences.

Mikan's PT has been pleased with his gross motor progress. She is excited to see how he works with his new braces. He should get the new AFOs in a few weeks.

Mikan's OT recently retested his fine motor according to the Peabody assessment. Four months ago his grasping ability was at eleven months. Now it is at forty. As his core strengthens, the rest of his body is falling into place.

On a side note, I welcome any suggestions to get our thirteen-month-old to SLEEP THROUGH THE NIGHT. I am convinced I am doing something desperately wrong. Mikan hasn't been sleeping great either, so we are all a little tired here.

Did your three-year-old ever tell you his dreams? Last night Mikan said he dreamt that he went to Egypt and there was a number four on the ceiling.

Wednesday, January 4, 2012

Another Physiatry Update

Mikan enjoyed Christmas this year. Some of his favorite presents include a United States puzzle and card set, a World Puzzle, and a Handy Manny toolkit. He is getting good at identifying all of the coutries. He regularly studies the puzzle, reads the names, and asks us to quiz him. It is pretty amazing. His favorite song right now is "The Alphabet of Nations" by They Might Be Giants. Below is a video of him singing along with it.

Earlier this week we traveled to Indy for another physiatry appointment. His doctor was impressed with his progress. She reminded us that he was only taking a few steps at a time when she last saw him in August. She says that his strength has improved, he just needs to develop proper balance. She wrote a script for a new set of AFOs with a tether strap that allows more ankle movement to help him develop a more normal gait. She guessed that he might be in this new brace for another year before downgrading to an SMO. I thought she wouldn't consider an SMO for several years, so this was welcome news.

As John and I discussed Mikan's condition in response to her questions, she mentioned several times "You guys know too much." The first time we met her, she assumed I was a nurse because of the questions I asked. We get this a lot. Mikan's medical history has armed us with a vocabulary that allows us to communicate with medical professionals efficiently. Is this good or sad? Depends on how one looks at it.

But he had a good check-up, and we spent some time at the Children's Museum downtown during our trip. The kids loved it! Mikan's highlights were seeing Jupiter at the planetarium, maps of the world at several locations, playing in the water at the erosion exhibits, and sliding down the big Yule Slide.

Mikan in his element.

Mikan pointed out that this piece of the sarcophagus puzzle looks like Louisiana. I agree.