Saturday, February 18, 2012

The Road to Recovery

Alex is on the mend. Strangely, the seizures, or perhaps the medicines he took while in the hospital, have relaxed his left leg and allowed him to run with a smoother gait. I don't think I'm dreaming this, because Erik noticed it independently of me. We don't know if it will last, but it is allowing him to build some muscle strength in his lefty leg. His left hand is weaker than it was before the seizures, or maybe it's also just very relaxed. CP by definition is where the muscles are constantly engaged, and can't relax. So, with some relaxation, Alex's CP has decreased.

Rather than cast his right arm this spring (which is inconvenient, because we still have ski season and lots of swimming we like to do, and we are keep into our hand writing exercises in Mommy School), we using a glove for an hour at time, several times a day. I don't necessarily try to do therapy during that hour, just let Alex go through the normal activities of his day. The minute we glove rightly, lefty comes to life. He is definitely making a left brain to right brain switch, kind of like when you go from thinking in your native language to thinking in a foreign language--your brain does a shift. Alex is finally at an age where he understands he must wear the glove, and an hour is just short enough that he tolerates it. Anything longer would not work. Half hours work better when he's tired.

He is slowly regaining his strength and building stamina after the trauma of his seizures. And so am I. Adrenaline must actually do cell damage because my muscles continue to ache, and I have been knocked back about 2 months in my training. I don't think this is all mental. So, as Alex must do, so must patient and slowly rebuild, physically and mentally. The weather is improving and on warm days we head to the trails, our favorite place to run. We also went back to the pool yesterday for our first swim session. Baby steps. That's what I always tell the kids, and now it applies to all of us. Baby steps, small incremental progress toward a larger goal.

Thursday, February 16, 2012


So, this is an ad, but it is inspiring. I often ask myself the question it poses, which is, "How strong am I?" Just strong enough? Or strong without measure...

Monday, February 13, 2012


Premature babies run a higher risk than term babies for all kinds of medical issues, from autism to ADHD. Last week, we discovered that Alex's prematurity, or perhaps the brain damage that resulted from that prematurity, has put him at risk for seizures. I suppose we should have assumed he was risk, but as he has been a relatively healthy boy for 4 years, we had never even considered the possibility.

Since Alex started going to preschool in June, he has been sick. Like all children who start school, the first year is a doozy with illnesses. I think this winter is worse than ever-I blame the unusually warm weather. Alex catches everything and recovers very slowly. His immune system is not as strong as his sister's and when he is sick, he won't eat, loses weight, and in general gets completely worn down. Apparently, the cumulative effect on his little body was to create the perfect opportunity for a seizure.

I won't go into the horror of finding Alex in his bed, post-seizure, looking as though he were taking his last breaths of life, or the terror of not knowing what had happened, so quietly, in the early hours of the morning when I was downstairs enjoying a cup of coffee. He seized for over 90 minutes, and we spent a lovely overnight in the Yale ICU. Five days have passed, and I still can't run. I was training about 12-15 hours/week for my upcoming ultra season, which begins in Utah on April 21. But when I try to take a step, everything hurts, especially my psyche. There is no pain like the pain you feel for your children.

It took Alex a long time to recover too. Fortunately, he remembers nothing of the event. It took him days to be able to sit up on his own, walk, talk...he's better today.

And poor Izzy, who witnessed her brother seizing, watched the medics take him away on a stretcher, then observed him plugged into machines and sucking on oxygen, and then had to stay alone at her Grandma's overnight, which she had previously made me promise I would not do to her--not because she doesn't love her Grandma, but because she gets so homesick to be anywhere without Alex. When we were all reunited, Izzy was shocked at the state Alex was in, and asked us repeatedly when he was going to be better.

When you are the family of a preemie, you wrap your arms around each other and face each new obstacle as it comes. Preemies don't just get better and move on. We can't live our every day in fear, but I'm sure there is an underlying sadness in Erik and my psyche that wasn't there when we got married. A friend of Erik's, whose wife and daughter have faced some serious health issues, commented to me the other day, "I know why you run so far. Like you, I need to see the sunrise every day."