Giggles

Most people would agree that the sound of a baby's giggles is possibly one of the best sounds you could hear.  Luke has the best giggles that come deep from his belly.  A simple nuzzle under his chin could always elicit sweet, music-to-your-ears giggles.  I've so missed that piece of our little Luke that's been virtually absent for the last month or so.  As we're learning more about infantile spasms, sometimes referred to as West syndrome, we're realizing how desperately we need this ACTH treatment to work.  Considering the bill for these two tiny vials was $50,000 (thank God for good insurance!), it has to work.  I made the mistake of researching on-line the other day, and the first article I read was written by a doctor out of UCLA who called infantile spasms "one of the catastrophic childhood epilepsies."  We're dealing with much more than we even knew when the neurologist confirmed the diagnosis last Sunday, but as our pediatrician said to us, this is Luke and he's an individual.  There's no way to know how this might or might not impact him at this point. 

We brought Luke home Wednesday afternoon and he continues to be such a little fighter.  This week is the highest dose (two injections per day) of the steroid treatment, so it's been a bit of a struggle for him.  The steroids make him extremely agitated and hungry much of the time.  Thank goodness Pete and I are quite adept at giving injections after all of the fertility treatments, but it breaks my heart to inject Luke in his little chubby thigh each time...with the same size needle we used for some of my injections, nonetheless!  Poor guy starts and ends each day with a rectal irrigation, followed by a big needle.  He's handled more than most adults could.  The home health nurse is coming twice per week to draw blood and do a full work-up to check for other potential side effects.  We'll see his pediatrician once per week, as well as the neurologist and cardiologist several times over the 8-week course of treatment.  The treatment can also cause severe constipation for him, which needs to be watched closely due to his Hirschsprung's disease.  We'll see Dr. Reynolds at Children's for that next week, so hopefully we can make some progress there. 

When we brought Luke home the other day he showed us signs that he was still our same happy little Lukey.  He was in his swing, looking up at the fish mobile spinning around, and giggled that sweet giggle we've so missed...and he did it over and over.  Yes, we all know there's nothing better than hearing a baby's giggle.  You can't imagine, however, how sweet the sound after missing it for what feels like an eternity.  Wishing and praying for more and more giggles, precious Luke!