Skip to main content

sticker shock

Thursday 11/23/2007

Your first Thanksgiving was spent in the hospital. We felt so calm this time during the admitting process. It was strange. I still hate the thought of being in the hospital. And I hate that we have to give you the shots. I wish there were another way. But right now this is it, honey. Your daddy says it's more the holding $5,000 in one needle than the actually pricking your leg! But he's been so strong for me - for you. He thinks if you were big enough to make up your own mind that you would chose ACTH too - side effects shmide effects. That it's worth the risk at a chance for a normal life. But no matter what path God chooses for you, we love you. Fiercely.

Friday 11/24/2007

Daddy gave you your shot for the first time today. I had to leave - but then I was torn up with guilt. I left because I didn't want to make daddy nervous. And I couldn't bear to hear you cry.
The nurses had to take blood from a vein in your head! Barbaric! But you're so strong & forgiving! You stopped crying the minute I cuddled you! It helps that I know you know we love you.
Toby & Bristel want to see you but the nurses won't let them - they're afraid you'll get sick. But they love you too, Trevor.

Saturday 11/25/2007

You were so happy to finally be home again! I think you feel safest here. Your smile certainly says that!

Comments

Jarret said…
I can't imagine what you are going through, but you know we love you and pray for Trevor a lot...he's a special guy.
Jarret said…
I didn't know you guys had this blog. You are doing a great job Danielle. I feel so connected by having read it. I wish I was there instead though. I love each of you and am praying for my sweet nephew.
Love,
Jenn
Danielle said…
Thanks for the love guys! We wish we could be together too... soon enough i guess

Popular posts from this blog

I cried when I got the news

I felt like such a heel not going with Trevy for his first post hemi EEG. Yeeeeeees...Jonathan went with him. Yeeeeeees...he's just as good as me. But still! He's my baby! I was instead sitting on floor 6 east waiting for Neurology to get their boots here and help me sort out this medicine mess! Seriously it's like a bad joke...how many Neurologists does it take to write a bloody script? And fax prior authorizations? Cause Trevy's been back for hours now. And I'm STILL waiting! Anyway... Jonathan had just stepped out to meet the pizza delivery guy when Dr. EEG made his rounds. Of course I asked immediately if he had read the EEG. Of course he had. That's why he was there afterall. And I cried when he told me... that for the first time in almost two years. For the first time since this whole crazy mess began. my baby's EEG is completely normal! Side Note: It's super fun to sob in front of Japanese men and watch them squirm When I kept repeati...

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's like being asked to the prom...

only MUCH MUCH bigger! I had noticed (yes...I stalk my site meter!) that a government ISP had logged onto Trevor's blog. Whoever it was had spent a good deal of time hanging out too. Followed a few minutes later by a government ISP...hailing from Washington. As in DC! My eyebrow raised. It was just kinda odd. Note-able odd. You know? Anyway...later that day (last week) I was folding laundry & thinking my crazy insane thoughts. Along these lines... I hope I'm not saying anything I shouldn't! Maybe I made somebody mad? Wait a minute! I live in America! I'm allowed to say anything I want! Aren't I???? A shout from the other room interrupted my thoughts before I had a chance to further mull. It was Jonathan. I had just received an email. **Side note...he's always doing that! Reading my emails! Sheesh!*** The said email was from a US Senator's aide! Asking if he could speak with me. Little ole' hardly has time to splash some make-up on ...