Seizures and Cereal

Exactly one week ago Owen had his second seizure.  His first one happened two weeks prior to his second one and his third seizure happened about four hours ago.  Seizure 1 left me shaken to the core and I could hardly find words to use when speaking with his doctor.  My hands shook for many hours after it happened and my heart continued to race.  Watching your child- a mere 3 month old infant- stop breathing and tense his whole body in your arms for 15, 20, 30 seconds is beyond frightening.  Seizure 1 came and went.  We upped his medication and moved on.  Seizure 2 was just about the same as seizure 1, except I handled it a bit better.  We also added a new medication after that one.  Seizure 3 happened in my mom's arms.  She called me in from the other room and I watched intently as he lay stiff in her arms.  Eventually he relaxed and started breathing again.  Another call was made to his doctor...more medication was dosed...and on we moved. My hands no longer shake for hours afterward and my heart only races for a few minutes following the seizure.  It is amazing how quickly one can become accustomed to such a terrible thing.

Seizure 2 will forever be etched in my memory.  The seizure itself was terrible, but what happened afterward will always bother me.  Owen  was prescribed a new anti-seizure medication (he is already taking 3 others).  I do not think this pill is designed for a 3 month old baby because it comes in capsule form.  How are we ever going to get him to swallow it?  I was told to open the capsule and shake the 'sprinkles' into a spoonful of rice cereal and spoon it into his mouth.  So I did. Hours later I realized what had just happened.

This story really starts when Ellie was about 6 months old.  She was an eager little eater and Pete and I decided she was ready for her first taste of solid food.  Mmmmm rice cereal.  Pete spent an evening assembling her new highchair as Ellie and I went out and shopped for all of her new meal-eating supplies.  Spoons, bowls, bibs, and the important box of rice cereal.  Then we read and reread the instructions on how to mix the cereal, pouring more and more milk into it until the cereal was just the right consistency for her to gobble up off the spoon. When it was ready, we placed Ellie in her shiny new highchair, and with Pete manning both the video camera and digital camera, we documented each and every bite of her first meal. It was so much fun!

Owens first foray into rice cereal went like this: Pete was in New York on a business trip and I could not figure out how to get the 'sprinkles' into Owen.  When his doctor suggested the rice cereal I quickly dusted off Ellie's long abandoned box, mixed up a spoonful, and stuffed it way back in his mouth to ensure his little tongue didn't push it out.  No highchair, no video or photos, no Daddy to watch him reach this new milestone.  It wasn't really even a milestone since he is far too young to be eating cereal.

I think about this every day, and like a true mom, feel hugely guilty over it.  My poor little boy struggles in every aspect of his life and it is just so unfair. Even the accomplishments really aren't accomplishments, they are just means to another end.  When Owen rolled over at 3 weeks, Pete and I were BEYOND proud.  Ellie didn't roll over until she was about 4 months old and would only roll left.  I thought for sure there was something wrong with her.  We learned while Owen was hospitalized that a baby should never be able to roll over that young.  It just meant he had increased tone and was an indication something was wrong.  Another milestone taken from my baby because of this terrible disease.