detroit timeline (the mini version)
Thursday night we'll kiss Toby and Bristel goodbye. They'll be staying behind with Grams and PopPop. We felt that made the most sense all the way around. Just try telling that to my arms which are already feeling cuddle withdrawal pangs. The car will be packed and ready for take off early the next morning. After our big flying fiasco last time. And the fact that I'm not comfy with Trevor having brain surgery and being 30,000 miles above the nearest Children's Hospital. We've opted to drive this go. Mapquest tells us to expect 13 hours.
So we leave early Friday morning, October 2nd. Hoping to make it over half way that first clip.
Arrive in Detroit Saturday, October 3rd. And then the real stuff begins.
- October 4th, Trevor will have a sedated MRI.
- October 5th, sedated PET scan in the am. Meet with Dr. Neuro-surgeon in the pm.
- October 6th, GRID placement.
- October 7th-8th, spent in-patient with grids collecting essential data pre-surgery.
- October 9th, Subtotal Hemispherectomy.
18 comments:
The very best of luck to you. Here's the weirdest thing about internet friendships - sometimes you miss out on the back story. Here I am reading about your drive to Michigan and thinking "Oh I could buy them lunch if they are passing through Chicago" which made me realize that I don't even know where you live...
We have a much mis-translated saying in Ireland "Go n-éirí an bóthar leat" (may the road rise to meet you...) which means "may you have a successful journey" I hope this is very successful and you get all you hope and dream for Trevor and he responds well and it helps him reach his potential.
I thought the same, that you could stop here in NY and visit Jen and I, but I'm sure you won't be coming this far north in NY. Although unless you follow I-90.... *grins* But I feel I should warn you, if you are indeed following I-90 across NY, be careful. That is a LOOOONG and lonely stretch of open road.
Hugs to you. I hope we're long gone by Sunday but if not, we need to meet up. What a road trip you have ahead of you!
Yeah Danielle, which route are you taking??? If you are taking I-90 you BEST let me know!!
Have a great trip. Your timeline is so much better than ours. I was there over a week before the grid placement and then we had to wait 5 days for the resection surgery. So, you have one thing to be thankful for:-)
Your family will be in my prayers. Here's to seizure freedom!
Erin M.
My goodness, I am pretty sure it was a blink of an eye ago when you got the dates for Trevy's surgery.
Praying that you have a safe trip, and that the seizure monster will be slayed once and for all, and your beautiful butterfly will really spread his wings and fly like no other.
Sending you hugs and a sense of peace as you prepare for the days ahead.
Jody
Well I guess it's safe to assume you won't venture into Texas on your way....but it so would be nice if my house was en route to Detroit!
All kidding aside, I hope you all have a safe, hassle-free drive there. Trevy's miracle awaits!
By the way, will you be online and updating then?
Danielle,
You are sooo in my thoughts and prayers right now. Although the most terrifying thing you have ever done, hang tight to the big picture... Wow....seizure freedom. You are awesome. Trevor is awesome.... Lots of hugs and love.
Marcia
And so...here we are. Prep time is coming to a close, and you hit the road real soon.
Wow, what a journey it's been, what a journey it will be, for you and Trevor.
You know I hope for nothing but the best of the very best for Trevor, and I like what Sinead said so I won't try to top it. The Irish have great sayings.
Sinead...thank you so very much for all the support you've provided. I love that saying...especially now that I understand what it means. btw...we're in RI. *smile*
Lisa...I hope you're gone too! ((((hugs))))
Jen & Adesta...Jonathan's supposed to be providing me with route info. If there's a Cracker Barrel near you guys...and we're passing by...we'll wait and have breakfast there!
Erin...ha and here I've been complaining that we're there for half a week waiting on testing! All about perspective...right.
Jody...thanks, hon!
Holli...I truly WISH that we did have to pass through your zone! Love you, shnooks!
Marcia...the company I keep is awesome too! xoxo
Ken...it has been one heck of a journey, huh. (((((hugs))))))
...danielle
Hey Danielle...
I am sure you are on pins and needles, and have been for some time...I am sending HUGE hugs and prayers for Trev...we all deserve a miracle for these little ones and I am praying for your miracle to be delivered through this procedure.
As you continue to walk through this, and the days ahead, through the fears, anticipations, rattled nerves, tears of worry and hope...remember to listen to "the voice of truth" ...it is so easy and natural to let our minds take us places...so just listen to His voice,feel His comfort, and He will fill you with peace.
I will be looking for updates and praying like crazy!
HUGS, HUGS, HUGS....
Depending on the route, there is one... okay, so it's a teensy out of your way (about 5-10 miles) but certianly doable.
Let me know, I will gladly take the morning off!
You're welcome to stop by ours for a coffee. Will be thinking about you...
If you miss the turn for Detroit and accidentally end up in Chicago then lunch is on me. When I lived in Boston I drove the thru way all the way to Buffalo and onwards to Toronto many times. (The things we do for love) Its a boring route but it has lots of rest stops which is helpful. Hope your journey is uneventful. I'm glad you are driving. It's less stressful. Take care. And feel free to freak out as much as you need to this week. Many hugs.
Sharing in your anticipation and anxiety (in small measure, I know).
Praying for Trevy and his family.
Barbara
Wow, i totally just got bubbles & butterflies in my tummy reading that. I can't even begin to imagine how YOU are feeling in this moment. I'm so happy that Trevy is getting this chance at his miracle, and praying that it all goes smoothly. I just love that little guy & you so much that I just want it to work & for you to get your happy ending. You guys definitely deserve it. Ok, i'm a blubbering idiot now but I just had to get it out there. I wish we were located on your route to Detroit, b/c I would so be waving you down in the middle of the interstate for some quick hugs. Try to get some rest the next 2 days & on the ride there. If there is anything at all you guys need or anything I can do for you, please let me know!! {{{hugs}}
So glad to get the tentative schedule...I am transferring info this to my Daytimer...Got to keep up with my youngsters!!
I wish I was there to help in some way....to chat with while waiting, to bring you a double espresso latte (if there is such a thing...I'm not a coffee drinker so am making that up!)...supply kleenex & trashy magazines to read...anything at all.
We're all rooting for Trevy! Me & my little family will be praying for Trevy, you and your family.
My heart is with you all.
Many hugs,
Margo
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