happy being trevy

      We've had a lot of friends/family asking about Trevy.     Since September we have noticed a significant spike in Trevor's seizures. Also, he has been having episodes (17 to date) that involve loss of balance and vomiting. It has become increasingly clear that these events are neurological. He's either experiencing intermittent pressure on his brain (a side effect of his surgery) or has an emerging seizure type.     The last night of our Disney vacation was ending perfectly. We were all packed and ready to head home bright and early the next morning. We decided to skip parks and just relaxed and let the kids play in the pool (their very favorite thing to do). Trevor even got a special gift from the life guard who noticed his passion for swimming! It was a perfect ending.     Around 8pm Trevor had a very severe episode which scared Jonathan, a friend and myself to the point that we called rescue to come. I am not the kind of ...

    We survived another MRI.     It doesn’t get easier.  For me, I mean.  Trevy was a trooper getting his IV in.  He was a trooper about not eating.  He was a trooper about having an hour delay.     He was a trooper right up until they wheeled us into the MRI room.  Once he was on “the table” his survival instinct must have clicked…because suddenly trooper was out the window.  He was clawing me and screaming “NOOOOOO!” and “ALL DONE!”  I bear hugged him hard.  He managed to rip my glasses off my face and tear my heart in two before the Proprofol did its thing.     I wish I were a better writer so I could do justice the emotional electricity in those moments.  I wonder if the staff feels it too.  Because to me it’s so tangible I swear you can taste it.  And if nothing else, feel it.  The heartache.  The hope.  The love.  The faith.  The stress.  The stre...

    His last “ episode ” was two Mondays ago.  That particular episode lasted much longer than the others and had me sending frantic emails to Nurse Neuro-Surge.  Maybe it’s the feeling deep-down that believes it’s pressure that had me freaking out?  All I know is that I was ready to race to the ER.  And in case you didn’t know…I LOATHE the ER.  I would only ever go there if I were seriously worried.  Which I was.     I decided to give it until after his nap.  If he woke up from his nap and was still off …we were going in.     Wouldn’t you know…     he woke up from his nap in an AMAZING mood!     Happy..     And SO clear headed.     The Trevy I know and love.     We’ve been enjoying his sweet-silly-happy cocktail mood ever since!     Stretches like this make my heart soar with joy!!!  Soar, I tell you!     So how could I...

    I started a new tradition this year.  Listing things I love about my kids on their birthday.  I number according to the age they happen to be turning.  Toby and Bristel already had their turn.  And it served to prove that they were not switched at birth.  They’re way too sappy like me to belong to anyone else!     Today is Trevy’s turn.     Today, my little baby turns six.       1   I love your sense of humor.  You have a way of finding the funniest things hilarious and it’s contagious.  And no matter how many times you add “poop” to the end of a sentence or a song…somehow it never gets old.  You have the best belly laugh ever!     2   I love your snuggles.  I know you’re getting bigger.  And maybe the day will come that you won’t want to snuggle any more.  But for now, you still climb in my lap and cuddle me up.  And I love every second o...