Tuesday, February 28, 2012

Mikan's Puzzle

Mikan is pretty whipped when he returns home from school. He sometimes falls asleep wherever I leave him.

Can you see what Mikan spelled?

Medical Update:

*Next week Mikan visits his developmental psychologist who will most likely slap another label on him.

*Early April Mikan visits his developmental pediatrician who will provide us with input about possibly removing the g-tube. His pediatric GI will also have a say, but that appointment has yet to be scheduled. By the way, I happened to pick up the most recent issue of Parents magazine in the library while the kiddos were playing and I noticed an article on picky eating. The article included an interview with Mikan's GI doc (Mark Fishbein). Kind of neat! The article didn't tell me anything new, although I did have a chuckle over a line about "most patients" seeing food chaining progress "within a few weeks." I'm not pessimistic about the approach, it was just another reminder of Mikan's "differences" within an already "different" group of eaters.

Other Updates:

*Mikan has developed an affinity for Mo Willems books (Piggy, Gerald, and Pigeon)
*When he pretends to be Baby Jaguar, he uses the pronoun "I" correctly (otherwise he still refers to himself in the third person)
*He has taken to imitating John's pre-wrestling call of "You can't handle me!" (in other random non-wrestling settings as well)
*Mikan has walked all the way to the library we live by in town (about 1/4 of a mile). What an accomplishment.

Wednesday, February 22, 2012

Elton John/Baby Jaguar Update

John calls Mikan and Anica Elton John whenever they wear these glasses. Then he starts singing "Goodbye Yellow Brick Road."

Lately Mikan has referred to himself as "Baby Jaguar" (from the TV show Diego). He calls me "Dora," John "Diego," and Anica "Boots." He just labeled one of his homecare nurses as "Swiper" today too. It's pretty funny. There's another great example of the imaginative play his therapists are so concerned about.

Mikan's gross motor progress continues to improve. He does a lot of static standing now and can turn and redirect movements, maneuver around obstacles, and get up from the middle of a room without grabbing onto anything (although it takes a lot of effort and grunting). He has adapted well to his hinged AFOs, although they are extremely difficult to fit into shoes.

Most of Mikan's nursing has been eliminated. We have barely enough hours to get him through the school year (We were letting him ride the bus home with a nurse since his developmental preschool is a 25-30 minute drive from our home). If he keeps a g-tube through the summer, there is a chance he may continue to receive a few hours, but ultimately, we just want the tube gone. He hasn't gained any weight yet since we've stopped using it, but we're holding out hope for a healthy spring with some healthy weight gain.

We are beginning our annual fundraising efforts for the March of Dimes. Please consider donating to our team. We are confident that Mikan's progress is due to the great research conducted by the March of Dimes. You can click "donate now" on our March of Dimes badge on the left-hand column of this page to make an online donation to Team Mikan Boy. Thanks for your support in helping make sure more babies are born healthy.

Wednesday, February 15, 2012

Almost Wordless Wednesday

Paging Dr. Anica

Mikan's lunch. He ate the potato sticks and M&Ms, his staple diet for the last week.

He even gave himself glasses.

Wednesday, February 8, 2012

Another Mikan Drawing

Another picture from this week. Now does that look like a three-year-old wrote/drew that? A three-year-old with ataxic cerebral palsy? I don't think so.

I wish I had something positive to blog about with Mikan's eating. But I don't. So I'll just keep my mouth shut. However, I did find a GREAT app for teaching social stories. It's called MyStories. I am writing a guest post on Mikan's speech therapist's business blog soon about the app. I will post a link when it is published.

Mikan is really excited about turning 4 soon. It is his favorite number. He has been carrying around his birthday candle everywhere he goes. He even wears it in his glasses.

Wednesday, February 1, 2012


I thought we were making progress on the flexible drinking front. Mikan finally began using a different milk cup and taking adequate quantities of fluid. He didn't ask for his old milk cup, so I didn't give it to him. Today, when his new one was in the dishwasher, he refused to drink anything out of his old cup. In fact, he went so far as to take fake sips from it to appease me. He starved himself all morning until the cup was clean. He has also refused a Dora cup we bought and several other straw cups we decorated. At least I'm pretty sure his refusal is primarily behavioral-related now (with a sensory component, of course). It's just hard to let a kid starve who has difficulty gaining weight. And gaining weight is what he needs in order to get rid of the g-tube. We'll keep trying I guess.

New cup is on the left. Old cup is on the right.

Mikan's psychological evaluation was rescheduled for early March. At least he'll get another month of "developing" in before testing.

Mikan and Anica "helping" me pack their suitcases for a weekend visit with family.