Our First Family “Vacation”

A baby’s life is full of firsts.  First bath, first holidays, first tooth, first steps etc.  You get the picture.  There is also the first family vacation.  While for some that first vacation may be to visit family or perhaps a trip to the beach, our first family vacation was to  Rochester, Minnesota and the Mayo Clinic.  Do we know how to live or what?

It was the middle of March 2010 when we set out for a week’s stay in lovely Rochester.  The purpose of our little vacay was to find some answers to help our little boy.  I don’t recall any more how many hours it took us to get there, but the magic of the Google machine tells me it is about a 4 hour drive from our house to Rochester, so I’ll go with that.  What I do recall is that we set out under the cover of darkness on a Monday morning so that we would arrive in time for our first appointment that day.  At this time, Owen was seizing several times a day, and most often, his seizures would occur while he was sleeping.  Since we began our journey at night, I got to witness plenty of seizure activity as we made our way to Minnesota.

It was just a few weeks earlier that our neurologist had floated the boat about having Owen evaluated at the Mayo Clinic.  Originally, our appointment was to take place in May; however, that was unacceptable.  I couldn’t believe they were going to make us wait that long.  We couldn’t wait that long for answers.  I freaked out and called our neurologist indicating that the wait was simply unacceptable.  I for sure was going to have a nervous break down if we had to wait that long.  We were so thankful when she was able to have our appointment moved up several weeks to mid-March.

The Mayo Clinic is a very efficient operation for sure.  The plan was for Owen to be evaluated by a neurologist, ophthalmologist and to have an MRI and overnight EEG, among other things, and all those things were planned to occur during that one week.  Our hope was that by the end of the week, we’d have some answers and a concrete plan for combating Owen’s seizures going forward.

For our week’s “vacation,” we booked a room at a local hotel.  In hindsight, we could have saved a lot of money had we looked into the Ronald Mc Donald House, but we were new on this special needs journey and had no idea about those kinds of resources.  By the way, the Ronald Mc Donald House is awesome for families with sick children.  I think I need to dedicate a future post to them.  Silver lining, the hotel had a pool, and Owen got to have his first swim while we were there.

Again, as the passage of time as dulled my memory, I don’t recall each and every detail of what occurred during our stay, but there are some thing I recall vividly, for better or worse.  I remember stressing out over the wait for the MRI.  Because Owen needed to be sedated for the procedure, he wasn’t allowed to eat.  I decided I couldn’t eat either because I wasn’t going to eat in front of him.  I have a tendency towards hangry-ness, so skipping a meal is not good for my disposition, or the well-being of those around me.  Not proud of it, just saying.

I also recall seeing a mom about my size trying to wrangle her 8-12 year old daughter into the room to have her MRI.  The girl was not having it, so mom had to pick her up and carry her in.  The girl was almost the same size as her mom, and I marveled at how strong mom was.  Secretly, I hoped that I wasn’t witnessing my future.

I also recall Owen’s overnight EEG.  This required us checking into the hospital.  I elected to stay with him overnight.  The screen that was showing Owen’s brainwaves in action was in line with the couch I was sleeping on.  I remember not sleeping much that night, as I fixated on the screen which showed Owen’s angry, chaotic brain activity.

There were also some happy memories too.  I remember how we made fools out of ourselves trying to get Owen to smile while he was hooked up for his EEG.  Prior to leaving for Rochester, Owen had gotten a new toy which featured a dancing monkey.  There was a song the toy sang.  I don’t remember all of the words, but one line was “dance like a monkey and laugh, laugh, laugh.”  My husband and I both acted out the lyrics in an attempt to amuse Owen.  Mind you there are cameras in rooms where an EEG is being done, so I’m sure some of the medical staff witnessed our antics and got a good laugh.  So be it!

There was also the young gentleman who got on an elevator with us at the clinic and told us Owen looked like the Gerber baby.  I was flattered and surprised that someone his age knew who the Gerber baby was.  I also remember Owen taking his first swim.

By the end of the week we had a plan.  The plan was for us to try a new medication that was supposed to be very effective in stopping the seizures caused by Infantile Spasms.  The medication was Sabril, also known  as Vigabatrin.  We were aware of this medication through our internet research.  Like any medication, there are side effects  We had to sign off on a document which outlined the side effects and confirming our understanding of them.  I recall it stating it could affect his vision and cause white matter changes on his brain.  I’m not even sure if I understood what the white matter changes meant, but I knew I didn’t like the sound of it.  Reading the document and choosing to sign it was very emotional for me.  While I knew I had to because the medication had a chance to help Owen, it was also difficult to make a choice on behalf of another human being that could change his life forever.  At some point would he resent me for it?

Anyway, I choose to sign and we left Rochester with new hope.  Perhaps this would be what Owen needed to stop his seizures.  By now, we had been on this emotional roller coaster of a journey for four months and we were exhausted.