Friday, February 25, 2011


Mikan visited a developmental pediatrician on Wednesday. We are trying to figure out if Mikan's delays are due to his prematurity, his poor vision, his sensory issues, his cerebral palsy, his little exposure to peer socialization thus far, or if he may be on the autism spectrum. The doctor agreed that because he has so many variables to possibly explain some of his questionable symptoms (fleeting eye contact, lack of imaginative play, not sharing his attention with us enough, etc.), it would be unwise to diagnose him at this time. She wants to give him a few months in school and reevaluate with a psychologist. However, she did say that if he didn't have the medical history, vision problems, or sensory processing disorder, his behaviors are definitive enough to place him on the autism spectrum. If he is diagnosed, it would be a provisional diagnosis until he is 5 or 6, and he would be reevaluated to see if the label is still accurate.

We are optimistic that his symptoms are mild enough to be treated early. We've just been feeling a little overwhelmed lately. We've been told for the last few years by several doctors that there wasn't any reason not to believe Mikan would outgrow all of the delays caused by prematurity. This seemed miraculous given his beginnings, but we believed it with each piece of progress he's made. In the last two weeks, we've discovered that he not only has cerebral palsy, which will need to be monitored carefully for the next several years (requiring additional bracing, and possibly botox injections, surgery, and casting), but that he may also be on the autism spectrum. Mikan engages us a lot, and doesn't fit our typical picture of an autistic child, so we are trying to implement therapies to help him with socialization.

I really thought his schedule would slow down as he got older, but everything is getting more intense. Beginning in March, Mikan will go to a clinic to receive OT twice a week, ST twice a week, and PT once a week. He will also be attending preschool. The developmental pediatrician also wants his hearing tested and a repeat sleep study done since his last results were abnormal (with a capped trach). More testing. Deep breath. Whatever God has in store for us, we'll embrace.

Sunday, February 20, 2011

New Glasses?

Mikan has been wearing his new glasses for several days now. I'm not sure I've noticed too much of a difference yet, but I'm optimistic that maybe we will soon. He is supposed to use these for close up, and his old ones for distance. It's hard to figure out what is best for his eyes when he can't quite communicate yet what he sees.

The above picture was taken before his "winter wool" was buzzed off. Lately he has an evil grin that he gives his sister whenever she is delight in the fact that he may have been the cause...

The Daytona 500 is today. It will forever be burned in our memories as the anniversary of my water breaking with Mikan at 25 weeks. 3 years ago. He's come a long way.

Friday, February 11, 2011

A Diagnosis

I drove Jenna and the family to Indy on Thursday to see a pediatric physical medicine doctor (physiatrist).

The physiatrist did not hesitate to connect Mikan's walking issues with the scarring shown in an earlier brain MRI. And because the scarring took place before the age of two, it is called cerebral palsy. To be more specific, dipelgic (two limbs) cerebral palsy.

Because he was not walking yet, we pretty much saw this coming. Except for the fact he had had two MRI's and both were read to be negative for CP. The previous readers of the MRI must have thought the scarring was inconsequential. The specialist we saw on Thursday did not agree. The specialist also wants to change the bracing used on Mikan's legs (more aggressive with AFO's and braces designed to handle his level of muscular spasticity). Hopefully, these interventions hurry the progress.

The specialist did note how mild the CP, and spasticity were. He has pretty decent range of motion, weak lateral leg motion, and a tight calf muscle. Therapy, and perhaps a botox shot are the current remedy.

For those of you who knew me as a kid, it looks like I passed on my spasticness to my son. Do boys first learn to pee standing up?

Friday, February 4, 2011

We're Off to See the Wizard

This April we are walking to support the March of Dimes. Please help more babies like Mikan have a chance at life. You can click on Mikan's picture on the left side of the blog to view our fundraising page. Any donation helps. Thanks for your support!

We took Mikan to get his new set of glasses this week. He hates other people putting things on his face. He had a few meltdowns. I think the Eye Center was pleased when we left. Anyway, the glasses should come in within the next week. He will use the new glasses when he is inside mostly and maybe for school. We will use his current glasses when he is looking at things farther away outside. The optometrist said he will get used to switching and it will become obvious when to use which pair. Too bad he can't just get progressive contacts.

We see the physiatrist next week. We are hoping for some answers. Right now I feel like I am treating this person like the Wizard of Oz. I am hoping she is more than a man behind a curtain. Or else she gives us some great advice like the Wizard gave Dorothy and Friends, like "Mikan's had the ability to learn to walk this whole time, he just needed to look inside himself."

More playtime with Dad.