happy being trevy

It wasn't his nice white teeth. Or his beautiful eyes. Or his baby face. Truth be told...I'm jealous of his baby's bootay smooth skin! Or curly locks. Even if I am a big sucker for curls . It wasn't his 6'1 frame. Although I do love that he's taller than me. Nor was it his wry humor. He does keep me laughing. We actually had a real live date night last week. Not the cheering at a baseball game kind either. Although for the record...Grams keeping Trevy & Bri so we can sit on the bleachers and actually watch the game is one of our fave things to do! But this one was the real deal. We got all dressed up. Had a gift certificate to a fancy shmancy open air seaside place too! We arrived a bit early for our reservation and decided instead of waiting in the bar...to go for a stroll by the water. The air was warm. The sun low on the horizon. I wore my little black dress. Jonathan matched. Except in guy clothes. We were holding hands and talking. My ...

I haven't mentioned this yet. Don't ask me why. I really don't have a clear answer. Sometimes the answer is.. .just because . Anyway... We (meaning Jonathan, myself, Grams...and his team at school) have been noticing odd behaviour from Trevy during the past month. He's been cranky. He's always so happy-go-lucky. Except when an electrical storm is firing inside. Loss of appetite. The only time he hasn't been a good eater was when he was seizing. Posturing. We haven't seen that since pre-surgery. Staring. Long enough and non-responsive enough that I was certain something inside his head was firing. Short enough...to make me question myself. Lip smacking. A classic Trevy complex partial seizure que. Nothing overtly dramatic. Just off. And enough to cause my seizure-mommy-dar to alert. That something could be brewing. So of course I reached out to Dr. Neuro. Who immediately ran labs and scheduled an EEG. Both Dilantin & Trileptal levels ...

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It was just too shaggy... and at the very least a trim was in order... Trevy disagreed. ::smile:: His communication was very cute. Passionate signing and saying "duh" for "all done". Repeatedly ripping off the cape. Everybody there was clear on his position! I didn't think it was possible...but somehow he managed to look even more adorable!

And not just because of her amazingly adorable smile! Tomorrow morning... Charli's family will kiss her good-bye and hand her over to the Hope Team of Detroit Children's Hospital... You can follow her journey here . Karen... You've made it SO far! This far. And now you're standing on the Nightmare Miracle brink. I've been there. And know too well the terror and hope and saturating emotions that are swirling around you. Through you. Tomorrow will be by far...the most difficult day of your life. I'm praying peace...and comfort...and clarity...over you. Just like I have been... I hope you can feel it in your soul. And remember...I'm just a phone call away. My heart is giving you a great big Italian XOXOXO! And I'm asking those that have come to love Trevy through his journey...would do the same for you...

the time has come... to trim baby Frodo's hair... Yes... really. ::smile::

S o we bought the munchies... put the kids to bed early... drank caffeinated anything to stay awake... and catch the whole two and a half hour LOST sha-bang... only to still feel entirely confused??? Seriously. If you understood it...help a girl out! And here's to hoping the 24 finale is better tv than that!

Just a buncha... snapshots... of the kiddos... enjoying a beautiful sunny day... Hope you're having a sweet n' sunny weekend too...