Skip to main content

it's been one week

Sunday 12/2/07


7 days seizure free!

Comments

Jarret said…
So glad to hear that Danielle! How is he responding to the treatment?
Jenn
Danielle said…
He's doing SO good! We were worried because this a very serious drug w/major side effects! We've read about babies with roid rage - where the baby starts crying from the first shot until the last one works from his little system! It can induce juvi diabetes, high blood pressure, GI bleeding and even lowers the immune system to that of an AIDS patient! We have to test his pee & poopies 2x a week! So far Trev is only suffering from high BP which is being controlled with meds. He does have a nasty cold - which is worrisome but for now he's okay. His pedi listened to his lungs today and said he's clean.
He has an EEG next week - we're anxious to see if his little brain is still having "high voltage" activity.
We're just hugging & kissing him a lot these days. And are trying not to worry too much - right! :)
Love you guys...danielle

Popular posts from this blog

No, I don’t know him personally

  I’ve had several emails today asking if I know Mike W. of Marissa’s Bunny personally.    Trevy’s blog was linked on her site.  Although it’s not now.     I’ve posted here and there at his request.  Because…well…we’re a community.  Us IS families.  And Marissa is wicked cute.  Her daddy has a way with words.  Also who wouldn’t want the world to know about an iPad give-away?    But aside from that…I know about as much as you do.    We’ve never met in person.    Our only communication has been cyber.    I’m a ginormous sap and as such would love to believe that all is right.  That the sweet, beautiful families who were promised iPads will be getting them tonight.  Tomorrow at the latest.  That no one has been lied to.  That the personal thank you for your generosity email I sent him on behalf of other IS families I’ve grown to love and was thrilled to learn w...

I sure hope...

they grow back curly! Saw the "unknown" flashing on the face of my cell phone and knew who it was. Who it had to be. Dr. Fellow. My eyes met Grams' and I nodded. Grams has a pool, see. For super hot days like today. We're also having a septic installed. Which meant no water or facilities at my place. But those weren't really the reasons I was there. Close to mom. The purple ringing thing in my hand was. Only I wasn't prepared for it to be ringing SO darn soon. Shortly after lunch instead of dinner! I swallowed. Took a deep breath. And clicked connect. Dr. Fellow has a very nice phone tone. Clear. Hint of compassion. If only a stitch of humor were added...it'd be heavenly. But there was no humor. Just business. He's very direct. I'm learning that about him. Which explains his short hello. Followed by immediately pushing into the news. Being that it was a unanimous consensus. The entire surgical committee feels Trevor is a good candidate. And then p...

it ain't sexy livin' on an island...

Especially when you have to cross bridges to get ANYWHERE. Very LARGE bridges. The crests of which I inevitably get stuck at. Speaking of...why is it that at the tippity tops of our bridges...the railings always open up? To reveal an eagle's eye view of the white capped depths below? I HATE that. And sure enough...in route to Dr. Pedi yesterday...they must have seen me coming cause traffic ground to a halt at the top of the Mt. Hope Bridge. Where I felt less than Hope-ish. My palms gushing my nerves onto the steering wheel for a good 15 (felt like forever) minutes. Not just things medical bring out my cowardly lion. Heights do too! Anyway... Grabbed an iced coffee and chocolate cream filled to settle my nerves on the way. And we arrived on time...in one piece. Of course. Dr. Sick-Visit-Pedi breezed in chart in hand. Glanced down. Then at Trevy. Then said... "He has a history of Infantile Spasms?" Surprise and speculation in her voice. We get that a lot. It...