happy being trevy

I'm a sucky nut-sheller.  Apologies.  If it helps, I often wish I were one of the clever people .  The clever people have the ability to wrap all their thoughts up in two or three paragraphs.  Sometimes even sentences.  Succinct while not losing the wit.  And never go back for a post posting edit.  Or two.  Or three.  Million.       Yeah.  I'm not one a them. I suppose I'll have the thicker book someday.   ::smile::   But, really, it's hard to pare down 8 months worth of conversation.  Plus all the yesterdays  and tomorrows stirred up with it.  Can you believe it's been 8 months since our last neuro appointment?  That's twice as long as it should have been.  Things move at a snail's pace in Bean Town.  We've been waiting since September for Dr. Neuro to get credentialed.  Dr. Neuro has always been Trevy smitten.  Especially with his eyes....

Looking for a good end of the year reflective read?  I've got an idea for you...

Sleep has been a tricky deal ever since Trevy's seizure disorder became symptomatic.  Prior to that he slept like an angel.  Being parents three times over...we blamed the sudden night waking on teeth.  Ears.  Baby just being baby.   Never dreaming what was really to blame.  And for the next 2 years our sleep pattern went to pot.  A good night ended with only 3 wakings.  A bad...you don't even want to know.  Let's just say it did not a healthy family make.    And we tried everything we could think of.    Eventually we reached our last resort.  Letting him "cry it out".  Which was SO SO SO SO SO hard on our hearts.  But we were exhausted.  And our insurance wouldn't approve overnight help.  We were at the end of our rope.  I remember sitting sobbing outside his door while he wailed.  I remember begging God for him to just not be seizing.  I hated the thought of him...

"I've spent too long wanting what was taken from me  and not what I was given..."  Caspian, Voyage of the Dawntreader [film; 2010]

Our fave Dr. Neuro is moving.   Has moved actually.   From our local Children's Hospital.  To Boston Children's.   Ordinarily I'd give a big squeeze and with a best of luck.   But nothing about Trevy's journey is ordinary.  Including her.  She's amazing.  She has been with us since Diagnosis Day.  Through seizure freedom.  Relapse.  Med trials...both singulary and cocktailed.  She passionately advocated on Trevy's behalf...for Acthar to be covered by insurance...for radical brain surgery to be covered too.  I have her cell.  And emails...both work and personal.  She is always...always...always...available.  She trusts me.  And perhaps even more importantly... I trust her .   So we've decided to stick with her.  Commute n' all.  Because, really, how could we do any thing else?    Although the what should have been a one hour trek turned into two be...

Knock on wood... but we've had 3 straight days of major mood shift in Trevy.  Like, major.  Blog worthy major.   Less screaming.  No biting.  Random...as opposed to often...hitting.  Unless you count the dog.  She's still a target.  Only more with the kicking than the hitting.  Laughing all the way.  If I can get him to use his right foot I figure it counts as PT.    ::grin and wink wink:: But the biggest deal for me is the laughing.  Feel it down to his toes joyful laughing!   Running around the house and for no good reason laughing.  Melt your mommy laughing.   I love it!  I love to see him so happy!  Joyful and full of life!  So free!    I'd love to know why we're suddenly in a Happy Place.  And the reasons behind visits to The Not So Happy Places.  I really hope we unlock that mystery someday.  But in the meantime I'm choosing to enjoy today...

stars in his eyes bristel is very against real smiles right now Did I mention that I braved Breakfast with Santa solo?  Toby & Jonathan were somewhere else doing something sporty... too.much.cute.but.it.won't.last.for.long... Because that picture above, my friends...is the face of a little boy cheeky plotting! By this point, he'd had enough Santa & pancakes to last us until next Christmas!  Shortly after this picture was snapped...a sweaty mommy piled the kids into the car to GO HOME!

Maya Angelou once said... If I have a monument in this world, it is my son A beautiful summary of the way I feel about each of my children.  I take my role as their mommy very seriously.  It's the filter through which I make choices for each of them.  Be it to home school or not.  To deny myself that Pumpkin Spice coffee from Dunkin I'm craving so that they can play basketball...or gymnastics...or attend music class.  To spill my mommy guts on this blog.  And other places.  To choose a pediatrician 30 miles and a humonguous bridge thata way...because she's the best for them.  To hold Bristel's hands each morning while waiting for the bus and pray over her day.  That it will be filled with joy and growth and safety.  And then stand wrapped in so many layers I feel like a puffer fish on stilts...and yet I'm still freezing.  But I stand there waiting.  Hoping.  She'll turn and wave "I love you" with a peace sign tagging t...

 Because I love you and won't force mandatory torture on you -  The short story Trevy should have been in that picture.  ***** Because you might love me.  Or at the very least be looking for a way to dwiddle a few minutes of your time away and still feel like you've accomplished something.  I now give you... The long story It was such a beautiful night for light looking.  The air was crisp but without the classic New England wind so you could comfortably manage an hour or so walking around outdoors.  The twinkling Christmas display was absolutely magical.  Make you feel like a kid again breathtaking.  La Saelette will no doubt become a Foltzie Family Tradition. Only hopefully next year we'll either not need (cause yes ...I still believe in miracles!) or won't forget (cause the flip side of future miracles is daily life with Trevy keeping me grounded in our reality!) Trevy's leash! I realized as we were pulling the stroller ou...