well so much for that

There will be no live blogging.

Cause they can't hook our stinkin' laptop to the server! Grrrrrrrrrrr...

On the other hand...the EEG head hook-up went fairly well. Took about 45 mins from start to arrival at our room. I swear Trevy should be a hospital model. He rocks the outfit!

Can I just say...it's AWESOME not having that HUGE bed in the room! The pack n' play is perfect! I would totally recommend any parent with a little one bringing one of those puppies along. Makes it feel more homey. Less claustrophobic.

Trev's already put on a good show. Three clusters in as many hours. Once in front of a Dr. Neuro-in-training. And Ms. Nurse. Both with whom we have a really good rapport. They have kind eyes. And just that sweet...we want to rescue this kid attitude. My heart doesn't stand a chance! Love them!

We'll be starting Banzel tonight. 50mgs in the AM. 100mgs in the PM.

Not sure when Vigabatrin'll kick the bucket. Soon I hope!

I'm sitting in the Ronald McDonald House sponsored family room right now. Grateful for the internet access...without which I would totally lose my mind. Not so grateful for the stale donuts & last nights coffee. But they try. More than most.

I was actually thinking on the way up here...that I'd love to put together gift baskets with munchies...maybe a toy...a good book...etc. For families with babies that have to endure this kind of torture. Show of hands from those thinking the Epilepsy Foundation'll be open to sponsoring such a thing when I ask?

Anyway...I'm very rambly. That's cause I feel guilty leaving Jonathan & Trev's trapped in the cell.



kristi said...

Praying for you guys. Hugs.

Hollis T said...

I'm glad that the kiddo's putting on the show he needs to, but sad for the fact you all have to go through that. When we were in for H's monitoring she went from 6-10 drop seizures/day to 50 after having Topamax withdrawn. Very effective for data gathering, but really crappy to live through. We're all rooting for you here in Boston!

Sophie's Story by Elaine said...

Too bad about the internet access...though I do not think I would have the energy to do live blogging. Now it is my turn to feel bad about complaining...the longest EEG Sophie has ever had is 24 hours. I can't even imagine anything longer. We were so antsy to get out of there. I'm so glad the hookup went well. That was always the most traumatic part for Sophie. I can't wait to hear what Dr. Neuro has to say about the PET scan...sounds like good news. Hopefully, the EEG will back it up. Good luck with the next 2 days. Hopefully, everything else will go as smooth.

Monica, James, Connor McGuire said...

That stinks..I was looking forward to the live blog. ;)

Please let me know how the Banzel goes. that is our next option. i can't wait to see our new neuro in may at duke. connor has had an absolutely crappy seizure day. i wish i could just shake them out of him sometimes. every little spasm takes a chip out of my heart. so thankful you have a good team there with you. kind eyes..you are so intuitive.

Good idea with the baskets! I'm all in to form a NC chapter. hang in there, and give little monkey a hug from me. if i lived closer i would so bring you fresh coffee!! and an internet server that WORKS.

CharlisMom said...

I'm so sorry you can't get on the server. I've been thinking about you guys all night wondering how you were doing. I am REALLY glad you have a kind Pedi neuro-in-training and nurse. That makes such a huge difference. If I knew where you were (where are you?? I don't know what state you are in ) I'd bring you coffee and fresh donuts too. And I think the goody basket is an awesome idea..I think all of the local EF's should get on that (with some creative basket making moms maybe) Ok, now I'm rambling!! I hope you guys have a good night. Let us know how things go with the Banzel. Give your monkey a hug from my monkey. I can't wait to hear more updates. Thinking of you...

Shanna Grimes said...

Hope the Banzel goes well. The one time it's good to put on the "seizure show" is in hospital. Can't wait to see some pics of that cutie patootie in his gear. Good idea on the pack and play and gift baskets too. God bless!