Just another week in the life of a PMG kid

Aug. 24, 2009

I spoke on other pages how I say that my son is one of the hardest working kids that I know. To put in perspective the schedule he goes through, I’ve created a chart of the regularly scheduled appointments, meetings, etc. he attends or plays an active role.

What isn’t listed is for Wake-up, that also includes getting dressed, getting reflux medicine, seizure medicine, as well as eating breakfast (don’t forget with his oral motor delays, this is a 20-30 minute process.)

Hidden in the Bedtime hour is your typical bath, tooth brushing, pajamas, more seizure medicine, and the one big cup of drink (milk with Carnation Instant Breakfast) that he’s willing to drink all day.

weekly schedule * On Mondays he only has one of the two OT sessions as they alternate weeks.

The bumpy gray boxes are travel times. Nothing is really local for us. OT and Speech are downtown at Nationwide Children’s Hospital (20 min. one way). PT is at Children’s Close-to-home East (15 min, one way, it is closer to home). Preschool is on OSU’s campus (30 min. one way, actually longer until they open 315 back up). Equine-Assisted therapy is up in Galena (almost an hour one way). Gymnastics is in Dublin (again around an hour one way) We have friends from Canal also going up there, but because of car seats and parents going carpooling is pretty much out. When we had hippotherapy, that was in Hilliard another 45 minute trip. Needless to say we’re very grateful for nice weather, as once winter hits everything takes a little longer.

You’ll probably see that lunch and nap are fuzzy. As most parents know, trying to get kids to do what you want on your schedule isn’t always predictable. Those items probably will happen, but when and how-long are always flexible.

What isn’t included in the ‘normal’ schedule are all the other medical appointments Nathan endures: genetics, neurology, physical medicine, CP clinic, developmental disabilities, ENT, sleep studies, EEGs, meeting with county MRDD as well as wellness visits to the pediatrician. We squeeze those in around everything else.

Other kids have their Cub Scouts, tee ball practice, piano lessons and other activities which fill up their schedules. I don’t deny that also takes time and keeps all parents on their toes. Nathan definitely gets around and goes on his tour every week. In the end he proves it’s all worth it, with every new skill he learns and step he makes. His constant desire to do more is what keeps all of us going, one day at a time.

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