happy being trevy

I have to confess, Trev. I have been SO consumed with rescuing you...that in the process your brother & sister have felt a bit left out. So...I came up with the idea to throw a slumber party. Just the three of us. We snuggled up in our jamies. Munched munchies. Giggled a lot - mostly at Bristel cause she says the funniest things. Like - Bristel : I want eggs Me : Bri-bee I already made noodles Bristel : But I want eggs Toby : noodles have more vitamins Bristel : vitamins???? Toby : yes, like vitamin B & E & D...(blah blah blah went the lengthy lecture about how butter & parmesan laden egg noodles are better for your body than real eggs) Me : (silently battling my conscience...do I tell my son that mommy was too tired to make healthy food for our slumber party...that slumber parties are about junk food...or do I let him continue to blissfully believe the noddles will turn him into Nick Markakis someday?) Bristel : (applies hand to forehead quite dramatically) Me : (co...

...A-nother doctor. Yes, that's right. We have added yet another specialist to your portfolio, Trev. Let's see we already have - Dr. Pedi - your everything doctor. Dr. Uro - logist, that is. He fixed your kidneys last October. We LOVE him...and he has even visited you during some of our Hasbro stays. Dr. Neuro I - he was the first to diagnose your Infantile Spasms. Dr. Neuro II - we call her your girlfriend...cause she makes you smile a lot! Various therapists & such. and now introducing..... Dr. Endocrine - we (me, you & daddy) sat in his office not really sure why we were there. In fact, we met his, "now, you know why you're here right?" with glassy eyed stares. He broke out a flip chart & lots of big medical jargon...and understanding began to dawn. We knew the risks (which are many & intense) of ACTH before we ever gave you that first (dreaded) injection. But we also knew it was your best shot (no pun intended) at beating the IS odds. We ...

doesn't even begin to touch how we feel after our 48"ish" hour hospital stay... which means mommy's creativity meter is running low...so I decieded to do a picture story instead... watch out ninja turtles...here I come... mommy & trevor smoochie facing pretty providence mommy & trevy enjoying to view from 6 stories up Project Linus donated little cloth toys & the red blankie for you to play with... sweet dreams - the essentials for a good test we were *hooked-up* with toys too! coming un-glued love the do little man so at the end of the very long hosptial stay...we're back where we started. You're still having spikes from your left temporal lobe - your MRI is still inconclusive - you're still not sleeping well - you're still our beautiful little monkey - and we're still wondering what the next step in our saga is. Hopefully we'll find out Jan. 28th.

I am SO glad today is over... between the depriving you of food... ...the watching the nurses poke every extremity (twice) before finding a vein... ...the sitting in the waiting room for over an hour (I hate waiting rooms)... ...the after anesthisia grumpies (altho you're a cute druggie)... ...the never ending waiting game (we're waiting for Dr. H to call with the news)... ...oh...and my brilliant idea to have all 3 of my children pose for a picture together (yeah right)... Like I said...I'm just glad today is over! Maybe Dr. H will call tomorrow...

1/9/08 It feels like we've lived a thousand years this past month. The unfortunate thing is - I think my face agrees! Ugh! Anyway... Today we're hoping to get the "all clear" for you to go out into the germy world again! Dr. H waved her magic wand and "ta da" we're going for your MRI tomorrow ! I'm happy. I think? My heart is desperate to know the results. But afraid of what it might all mean...or that they won't see the lesion which would equal "Boston here we come". For a PET scan. And more stinkin' waiting! Then you're being admitted on the 16th for a 48 hour VEEG. They need to watch your little brain waves on that machine that gives us a migraine - and note the odds & normals. I have no idea how we're going to manage that one! Keeping you electrode"ed" - and playing quietly - for 48 HOURS! Don't they know you just learned to crawl!? Sheesh... Then we wrap it all up & tie it with a bow by a meeting ...