Monday, July 25, 2011

Little victories

Sometimes you have to celebrate the small stuff... two small victories to share.

We have successfully weaned Will off of his neurontin! It took several weeks, but with the taper schedule from our neurologist and the assistance of Will's teachers and caregivers, we stepped down from 2.5mL three times per day to nothing! With no negative effects.

Will was put on neurontin in 2009 for the pain associated with his g-tube surgery. It worked very well for calming his vomiting. Around the time the pain subsided, Will's seizure disorder was diagnosed, and because neurontin also acts as an anti-epileptic, we didn't want to mess with any of the drugs he was successfully taking.

We have now found an anti-epileptic drug cocktail that seems to be controlling Will's seizures (neurontin is not one of those drugs). Will takes a lot of medications, so if there is a drug that he really doesn't need to be on, our choice has been to try to get him off of it! Aside from the positive aspects of neurontin, it can have negative effects on the body's ability to regulate its temperature. On neurontin, Will "wilts" in the heat, so summertime in NC is really a challenge for him. So this is a very positive step!

Luke has been potty trained during the day time for almost 2 years. We've been working steadily on getting him potty trained overnight. He started to refuse diapers or pullups right around the age of 4, so we took that as a sign that his body was ready to go the whole night with no accidents.


Though some nights Luke does well, there are other times were three nights in a row he would wake up with soaked sheets. His vinyl mattress cover was really proving its worth! So for the past couple of months, we have been stopping all fluid intake at 7pm, Luke goes to bed at 8, and then we wake him up around 11 to go to the potty. We make him walk sleepily to the potty so he doesn't expect to be carried. Its been working pretty well.

We weren't sure how long this would have to go on. But last night, we got our answer. I was already asleep so I didn't get to experience this firsthand, but right around 11pm while Nate was playing PS3, he heard Luke and Will's door open, and Luke emerged. He walked right into the bathroom, dropped trou, went, and walked back to his bed. Wow!

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