happy being trevy

    I have NO idea if this is on sale at your local Target…     Unless of course you live locally.  Then by all means…I suggest you hit up the Dartmouth Target where I snagged…     Shape & Find Elmo Play Do set for just $8 buckaroos!            I’m stoked!  I’ve had my eye on this for aaaaaages!      Can’t wait to see his little face when he peels back the paper!     …danielle

  I draw a lot of inspiration from other blogger mommies.  A LOT.      When I ran across the idea of Tot Trays I immediately knew I needed to get something similar- ish going for Trevy.  I add the ish because…well…Trevy is Trevy and because he’s Trevy we have to be creative in how we implement such a system.     For one thing…I could never (or at least not in the near future) have his trays out on the lower shelves where his curious little fingers could get into them without supervision.  While in many ways Trevy has grown into an easier to manage place…he still needs 100% supervision 100% of the time to keep him safe.      My goal (I repeat GOAL ) is to go through all of our trays each day.  The reality is…most days we’re lucky to work through 3 in a row.  And weekends are just that.  Weekends!  But I figure if we keep plugging along eventually it’ll become a routine.      I s...

  Infantile Spasms is a diagnosis.      And a marker.     Or symptom…if you will.     A symptom of something else .  Because once you enter Infantile Spasms Ville you quickly learn that seizures in and of themselves are not the final diagnosis… they are a symptom .  Of an underlying cause.  And in the world of Infantile Spasms there are many underlying causes.  Each underlying condition a spectrum.     Spectrum according to Dictionary.com :     a broad range of varied but related ideas or objects, the individual features of which tend to overlap     You know .  The same but different .      Each IS baby has a unique journey.  And those that share the same Underlying (spectrum) Condition do too.  Each Cortical Dysplasia child.  Or baby who had a neonatal stroke.  Or has Tuberous Sclerosis.  Or Dravets .  Or Mito…   ...

    I’m totally think our next IEP should involve a little crafting too…         It’s a Brain Hat!     Seriously, though.  I think this might just be the coolest brain craft I’ve seen to date!  In fact, the kids and I’ll be making our own when we study anatomy later this year.  Of course Trevy’s will have one side that’s all black except for the word “miracle” floating around where his left hemisphere should be.  Click me to learn how to make onea these bad boys yourself.     …danielle

    you hunt around online and find some random specialist…     decide that specialist might be a good fit for your child’s special need…     so you call the random office and nutshell your child’s special story to some random receptionist…     who relays said special report to the specialist…     who CALLS random you back the SAME day and spends 20 minutes listening to your ( literally , sob) story and promises to look into more options and call you back tomorrow.      All free of charge!      Okay…so not all special doctors are quite so generous.  But my God…I am thankful for those who are.  And you know what…shame on those who aren’t.        And I can’t help but think you know you’re a special needs mommy when random specialists spend large chunks of time helping guide decisions about your special little one!     …danielle

    Hi People!     Called Trevy from his spot draped over the back of our sofa.  Which looks out our big front window.  The perfect people watching perch.      It was so cute I couldn’t help but laugh.  Trevy likes to make me laugh so he continued…     Hi, Mommy’s car!     Followed by…     Hi, Daddy’s car!     I joined the fun with…     Hi, basketball hoop!     He grinned and thought for minute before adding…     Hi, Callie’s (cah-ye) pooooooop!      I rolled my eyes and groaned.  He thought that was hilarious and finished our convo with…     Hi, peeeeeeeeeeeeeeeee!      Such a boy.      …danielle

  I have known about the study…for, like…ever.      I have wanted to participate in the study for exactly the same amount of time.     But.      Well.  You know.     Life.     It takes exactly everything I have to offer to make it through each day.  The extras tend to fall by the way-side.     So yesterday, when Dr. Research approached us in the lobby of Boston Childrens to discuss our interest in participating with the Epilepsy Phenome/Genome Project I was, like, sign me up!  He had all the paper work ready to go.  Is sending us the blood draw kits.  And we can even book in-home labs!     Can’t get much easier than that.     And they’re still taking applicants.  Visit the EPGP’s website for more detailed info.      …danielle