Skip to main content

what's up detroit

There is a beauty in being busy. And as exhausted as baseball season had us...there was a beauty in it.





No couch potato time.





No unlimited dwelling on Detroit time.





But now that it's just a weekend away...we're getting jittery. Very. J.i.t.t.e.r.y.






Anyway...






Because I've been asked for a little more specifics. For praying purposes. Here's The Plan.



Sunday...


Leave RI early afternoon in route to Detroit


Check into a very swanky hotel...thanks to Coach B!



Monday...


Trevor will be admitted & hooked up to the leads around 4pm for a 24 hour VEEG.
Jonathan will spend the night with Trevy in the hospital. I can't think without my sleep. And I'll need my wits about me for our consult the following day.



I keep telling the EEG techs at Hasbro that Trevy should be the hospital model! That cute face!

Tuesday...

Late afternoon Trevy will be unhooked.

Meet with Dr. Rockstar at 4 pm-ish. We've been told to expect it to be a loooooong consult.

Wednesday...

Check out of our swanky hotel bright & early.

Thursday - Sunday (back at home)

Try to re-coop! Hospital stays are a butt-kicker. But important hospital visits knock SO much more outta you. And it takes awhile to get your feet back under you.

Labels:

Comments

Mama Skates said…
best of luck...i hope everything (from the trip, to the stay, to the tests, to the consult) goes smoothly!!! praying 4 u guys!!!

xoxoxo,
sharon
July 28, 2009 at 7:01 AM
Anonymous said…
I totally agree with the hospital model thing!!! They don't come any cuter!!!
I am praying for your family daily. Praying you get the answers you are seeking. I know how weird it is to pray for your child to HAVE brain surgery. With it, the possiblities are endless.
xoxoxo,
Marcia K
July 28, 2009 at 7:12 AM
Melanie said…
Hey we would love to come visit you in the hospital when you're here, if you're up to it. Let me know and we can make arrangements or give you guys a break or grab you something to eat. Just send me an email and let me know.

Melanie
July 28, 2009 at 7:35 AM
Adesta said…
I'm so glad that you are able to get to Detroit without worrying financially how you would cover such a trip. There are a lot of us thanking Toby's coach I'm sure.

Will definitely be keeping you all in my prayers and am sending good wishes for good results!!!
July 28, 2009 at 8:25 AM
Holli said…
I'm counting down the days right here with ya!

And, I can't tell you how glad I am that everything has worked out for Trevy to go! From the insurance to the flights, etc.

I'll be praying for you guys!

Love ya!!
July 28, 2009 at 9:34 AM
Danielle said…
Thank you guys SO much. I'ma mess today. Every time I think about what this next week means...I feel like I'm gonna hurl. I was SO strong two days ago. What the heck? Anyway...

Melanie...we would LOVE to have a visit! Does Daniel do hugs n' smoochies...cause I'm dying to give him some!

...danielle
July 28, 2009 at 11:56 AM
blogzilly said…
Can't wait to hear the results of the visit. Tell Dr. C I said Hi...probably won't remember us. Anyhoo, I'll be checking diligently for any news on the trip and hoping for the best.

-Ken
July 28, 2009 at 1:41 PM
Anonymous said…
Definitely Trevy should be the hospital model.

Thanks for the details cause they help me keep you in mind. I doubt I need to include them in my prayers as, God knows, I'm referring to YOUR Trevy and not any other. ;)

Barbara
July 28, 2009 at 2:46 PM
Colby said…
Danielle...I am glad you recognize your need for sleep...That is SO important!

This trip has really worked out perfectly...from plane tickets to hotels....Those who love you are REALLY coming through!! Doesn't that feel WONDERFUL???

So you hang in there, keep blogging if you can, and BREATHE!!!! You will do JUST FINE! You will surprise yourself!!!

Love to you and your family!!!

Cyndi
July 28, 2009 at 7:12 PM
Post a Comment

Popular posts from this blog

a different kind of muscle — guardianship process

  To all the parents who have walked through the guardianship process — my heart is with you. Our paperwork is prepped and ready to submit this week. He turns 18 on April 3rd. I've been thinking about this for a year now, but only just mustered the energy to move forward — the loom of his birthday my propellant. Overwhelm has paralyzing effect. I'm struggling to recall the last time I didn't feel overwhelmed. It struck me how all these years of walking through disability beside Trevor should have made me stronger and yet... I suppose it's a different kind of muscle being developed.
1 comment
Read more

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...
23 comments
Read more

the great answer hunt in the land of Infantile Spasms

If I've said it once... I've thought it a million times more. How it's like the more I research...and discover...about IS. The more blurry everything becomes. For every answer found. A dozen questions are unearthed. Remember our whole ARX saga ? Yeah...that threw me for a loop. So much so...that I never went on to post the end of the story. Thus far... See...the unbelievable in the world of genes happened. Because this is IS-ville after all. After Dr. Genes sampled Trevy's ARX gene on a whim...a whim which revealed an unkown (meaning the first time this specific change was found) mild mutation...she proceeded to send Toby's blood off to mad scientist central. With assurances that this was totally unnecessary . She was convinced that Trevor's ARX mutation was the underlying cause of his Infantile Spasms. And that Typical Toby...would prove to be just that. Typical...at least in all areas mutate-able. And yet...Toby's ARX blood sample revealed THE SAME MIL...
14 comments
Read more