Friday, June 29, 2012

The Cousins are Coming! The Cousins are Coming!





My sister, her three kids and my mom came for their annual trip to North Carolina. Whether we were swimming, playing mini-golf or painting pottery, the kids had a blast. Almost 10 days and not one fight among the six kids. Pretty amazing!

For the first time, I kept Ben home from camp so he could spend all his time with the cousins. It was the right decision and worked well for this trip.


Ben is on his new medicine regimen and I record every pill taken, at what time and Ben's activities and mood for the day on the computer. I faxed my observations to the doctor today and so far we are both happy with the results. Ben is more alert, happier, less sleepy during the daytime and his walking is stronger. I think it will take time and therapy for his walking to be what it was before this all started in March. i think you will even notice these photos show an alert and happy kid.

Earlier in the week, two of Ben's drugs interacted to make for a very sleepy Ben. I gave Ben another sleeping pill when he awoke at 1:30am one night. The second sleeping pill, Doxepin, combined with the ONFI at night, made for a very different Ben the next day.

For nights when Ben cannot sleep, we may have to ride the wave or risk a drugged-out kid the next day. I will continue to record meds, dosages, moods and sleep schedule. I found patterns in just one week of charting this information. By sending this directly to the doctor, I did not have to relay it to the nurse over the phone who then translated it to the doctor. Inevitably, something is missing from my message by the time it gets to the doctor. Then it takes 1-2 more phone calls to get it straight. I highly recommend the "type it out and fax to the doctor" method.

Ben's handprint on this mug. I am not dure why it is upside down, just happy it is not a big smear.

Sean floating in the "big" pool.
Ben at the sprayground.

Six kids - there's bound to be wrestling.

This may have been the fastest mini-golf game on record. Who knew you could place your ball wherever you wanted? Wait for your turn? That rule is for other families.

Sean took dressing-up to a whole new level at Discovery Place Kids.

Ben's almost as big as Grandma.

And the water fights...

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