The Birth of Baby Buddha

So we left the hospital with our little man and his expensive, precious elixir, hoping for the best.  Told that Owen would be immunosuppressed and given it was the dead of winter, we planned to spend the next six weeks that Owen would be on ACTH on the down low, leaving the house only for work and doctor’s appointments.

For some, ACTH works right away.  The spasms go away with one dose or maybe a few more.  We were not so lucky.  Owen’s spasms persisted.  During that time, we lost our baby.  There were no smiles, there was no joy.  He barely opened his eyes.  He seemed utterly miserable.  As a parent, it was incredibly hard to watch.  I wondered what quality of life he’d have.  Is this how it was always going to be from now on?  The thought of that being the extent of his life filled me with dread.

Finally, on day 21, he had a spasm free day.  We were overjoyed.  Even better than that, we got a smile.  I was holding Owen for our evening cuddle when it happened.  My husband wasn’t home at the time to see it.  I called him immediately to tell him the good news and he was just as tickled as I was.  It looked like our baby was coming back to us.  Not only did we have a spasm free day, but we also got a smile.  Best. Day. Ever.

They told us that ACTH had lots of nasty side effects:  high blood pressure, high blood sugar, irritability, and insatiable hunger to name a few.  At first, we had a nurse come to our house at regular intervals to check on him.  Luckily, Owen tolerated the medication well and she felt she no longer had to see him after a few visits.  We seemed to be dodging the side effects they warned us about.

They also warned us there would be weight gain.  I don’t recall how much Owen weighted before we started ACTH and I honestly can’t recall how much weight he gained while on it.  What I do recall is Owen turning into baby buddha.  He began to resemble a little sumo a little sumo wrestler.  The picture I included with this post is a picture of Owen about 4 weeks into his treatment.  His little face got chubby, as well as the rest of his body.  His little belly got so pudgy and hung over his diaper.  He kind of reminded me of those gentleman we’ve all seen on a beach wearing a speedo that is all but hidden by a protruding gut.  Although Owen looked adorable, whereas those gentleman on the beach not so much.

His little thighs got so chubby too.  I remember his neurologist cooing over those cute little, chubby thighs.  Normally, she was a pretty stoic lady, however, she was a mom too, and what mom can resist cute, little chubby baby legs.  You just can’t!

Things were looking brighter at this point.  Our baby’s smile was back and we had 21 days without spasms.  Had the storm passed?  We sure hoped so.