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 proceeded to lay out The Plan. Which he made to sound will be unfolding in the near future. Because the team is very disturbed that Trevor is having...and has been having...hundreds of med resistant seizures daily. For the past year. A scenario which they believe surgical intervention could alter. Is it morbid that for the fleetest of moments I felt vindicated that they would notice? And that I was not alone in my disturbia? Which is not just limited to my flesh and blood...but extends to all the other families I've grown to love through this journey. I deeply love you! And I know the mountains of courage it takes to live moment by moment. From one seizure to the next. Which is why my heart was soaring and sorrowing all at once.

But I didn't have time to linger. Dr. Fellow was marching onward into what to expect next.

MRI on a Friday.

PET scan on Monday.

Wait...wait...wait...a bloody sec! The additional PET scan threw me for a loop. And I said as much. If we're all convinced surgery is a viable option for Trevy...why? Why risk an additional test that may or may not add to the clarity. My fear being the latter.

I'm not sure that his answer put my heart to rest. In part because he never really answered the why of it. Although he did alleviate portions of the fear. He assured me that the additional PET scan (being requested by Dr. Rockstar) would have to reveal significant right sided metabolic slowing for Trevy to be disqualified. They don't anticipate finding any right sided slowing. Only left. Which would further support our direction here. But nevertheless...Dr. Rockstar makes the rules. So an additional PET scan we shall have. On the Monday after the MRI.

So again it's...

Friday MRI

Monday PET scan

Tuesday Grid placement

Thursday or Friday Hemispherectomy. In layman's terms...the removal of half of Trevy's little brain. The damaged...seizure saturated...monster's lair...half. Slaying the beast forever...is our hope.

There are still details to be sorted. No dates yet. Just told to expect it to be soon. Which I'm sure someday...in hindsight...would be appreciated.

Today. It's just kinda hard to breath. What with the humidity...and hemispherectomy...lingering in the air.

It's good news. It really is!

I just wish the good would negate the freakin' scary!

Jonathan and I are yet feeling a little numb. And the only thought that keeps breaking through the freaked-out-fog is...

I sure hope they grow back curly! Cause I adore those curls! And the boy wearing them!


Holli said...

Oh sweetie!! I'm a bawling, blubbering mess right now! I told my husband just minutes ago that I've been obsessively checking for blog updates from you!

I had such good feelings about this, but tried to conceal some for "just in case". But I'm honestly so so SOOOOO thrilled that Trevy may just get his chance! And I'm so so SOOOOO proud of YOU for seeing to it that he does!

I love you guys...I love Trevy! These tears have shown me just how much!! Thanks for sharing the good news!



Anonymous said...

Okay, I read the FB update first...That made me misty eyed. And now? now I am just a sobbing mess. I am so, so happy for you. I am so proud of you...for being Trevor's best advocate in the whole wide world!!!
I continue to pray for all of you....
Hannah and Blitzen

Mrs. M said...

Oh Wow!!! (breathe, breathe...breathe...)
Just WOW!!!
So glad the waiting is over...well, the initial waiting. There must be such a mix of emotions...let HOPE prevail as always...this is WONDERFUL news and I am so excited for all of you!
Hugs and hugs and more hugs to all of you!!

MJStump said...

So it's pretty much impossible for me not to be crying tears of joy for you guys right now!

So so awesome!! I sure hope you guys are doing some sort of happy dance, because we are doing one here :)

I'm so excited that Trevy will get his chance to destroy this seizure monster once and for all.

Lots of hugs and smiles,

KC's Mama said...

Hang in there sweetie, you have come so far on this long road. I hate the scary...but I love the curls too!! Trevy is going to have so many people praying for, and thinking of him over the next few weeks. Time to go into overdrive on "Operation Save Seizure Boy" : )
NO pun intended...honestly lol. I will be doing my tiny part from Chicago...lots and lots of prayers.
Things are going to be ok...and you will get through this, just like you have everything else. And Trevy will prevail.

Love Karen

Anonymous said...

I am absolutely sure

they will grow back curly.

Love, Barbara

Liz said...

So excited for you!!!! How soon? I guess probably not next week.....I suddenly had a glimmer of hope thinking we might get to meet there.

I am so excited for you!!!!! I know it is incredibly scary, but you know that you can get through it. This part will be crazy and stressful, but it will all be worth it in the end, when you know you have done everything you could for him.

I am so excited for you!!!!!

Juan Chapa said...

My family is praying for lil' Trevor. He is surely in our thoughts, prayers, but most importantly in our hearts. You have given us hope for my 16 month old Diego who also suffers from Infantile Spasms. Thank you for all you do!!!

Anonymous said...

{{{HUGS}}} I'm so glad you made the trip and glad you got the right answer:-)

BTW, Ryan had no curls before surgery and it grew back curly. I'll have to send you a picture of him now. He definitely gives Trevy some competition:-)

Erin M.

Sophie's Story by Elaine said...

I am over the moon happy for Trevy and a blubbering mess for you. Because I know the emotional turmoil you must be feeling. The happy and sad all mixed into one. It is hard to sort through. I hope your date is soon. So very soon. Not only for Trevy but for you.

Katie said...

So happy for you guys, danielle!

JSmith5780 said...

I'm seriously thinking of driving to RI to give you all a hug :)

I am so relieved for you and happy for you and nervous with you. But know that Babu will be in that room right alongside all those doctors making sure little Trevy comes out of there whole (and with his curls!).


Anonymous said...

We will add "let them grow back curly" to our prayers!
Keep us posted on what your needs will be once you get the date set. Dont be afraid to ask!


blogzilly said...

Will the surgery be in Detroit or in Boston?

Tell you what...I was thinking the same thing Liz was at first, that you two would be out there at the same time and I was hugely comforted by that. But as soon as you know let us know, I'm anxiously awaiting the news.

I'm happy for you. I really am. I thin these days they don't actually remove a lot of the tissue, with modern techniques it is more of a disconnect in a hempispherectomy, so try to think of it in those terms and I know you will do better with that inside.

Anyway, I'm thrilled for you, I'm scared for you, I'm right there with you in heart, and maybe even in spirit. I may not be able to talk to God, but I sure as shit see a lot of evidence to make me question my lack of faith when it comes to people like you.

My word was slighbor, which made me think 'slightly like a neighbor'.


dave said...

hi hun,

its dave medeiros(nathans dad). im so glad that the news is positive. you and jonathan are amazingly strong and inspirational people. even though ive only met you a month ago i can tell you are great people. you and trev are in my thoughts. cant wait to see you guys again, no doubt WITH those curls. im a sucker for them too!

with love and hope,

Melanie said...

wow I can't even imagine getting that call. Excited at the same time as being scared. You guys are in our prayers and I hope the curls grow back too!

Again, i assume you're getting the surgery in Detroit, let me know and I will do what I can to help.

~Mama Skates~ said...

jumping 4 joy 4 u! i gave Curtis the news last night & he wasn't sure if he should celebrate or b scared...i told him that maybe now he feels just a tiny bit of what u guys r going thru...we can't even imagine! but sooooo happy that the monster will finally b slayed! that little Trevy is fast on his way 2 a seizure free life & yes, another head full of curls! ;0)

luv u much sweets!

Katy said...

Wow. This is my first time here and what a first time! I'll say some prayers for your family. Brain surgery is never fun, but it's often necessary.

Jenny said...

I am at a loss of words. Your words are powerful. Trevor is so very blessed to have you on his side. I will be praying for you daily, and for that curly-haired son of yours.


Colby said...


I think everyone has said it all here...

I know that YOU know how very blessed your Trevy is...To have this opportunity....

I can't imagine the multitude of feelings....

Just know that I am right there with you in spirit as you try and take all of this in....

I will anxiously await more details as you get them....

Between you and Ken, I'm going nuts right now!!!




Adesta said...

Ok...so what can I say that everyone else hasn't already said? I'm so happy that you got the results that you all were hoping for. Trevy certainly deserves this operation after enduring months and months of these horrible seizures. No child should ever have to go through something so terrible, but as we all know, God only gives us what we can handle.

I'm praying that you get a date soon. I sure hope Trevy's curls return too...they are just to adorable.

Oh, I'm so happy for you guys!!! I feel like doing the same thing as Jen, coming to RI to give you all a hug!!! I just got this great feeling D that Trevy will be ok and all will be right in your world once again.

Keep smiling girlfriend. You've done a wonderful job as advocate for your son and you deserve some recognition for that.

Lots of love!

fawn said...

Hi Danielle,

I just found your blog through Barb's TherExtras. I admit this is the only post I read (and part of the top one) and I didn't read through all of the comments, but I couldn't help clicking on Post Comment just to leave another little message of support.

What a difficult decision to make, though it sounds like you are thoroughly resolved. This summer I read "Gifted Hands" about Dr. Ben Carson (whose name is familiar to you, I am guessing). My little girl also has epilepsy, and I know I would do anything to make her seizures go away. (She also has drug resistant seizures, but we've been able to beat them back down -- not completely, but almost -- with the ketogenic diet.)

Argh, this is not a very coherent message. I guess I just wanted to say, "Good for you!" and "I've been there" and "Wishing you lots of strength and courage" and "You are amazing" all rolled into one.

I'll say a prayer for Trevor and for you.

Mom to Jade, 3 years old
Idiopathic Myoclonic Astatic Epilepsy
Keto kid since October 2008

Anonymous said...

slacker caught up again!!!!!!!

which btw I always read the comments, too.

baby trevor's mommy said...

Slacker better be careful that nick doesn't stick!;)


Monica~ James~ Connor said...

i just noticed that my comment from Monday night never posted...uggghhhh!!

it was all sappy and well versed too....tear...(stupid blogger)

Anyway, you know over the moon excited i really am for you, and nervous, and scared, and gloriously happy. I'm so glad that Trevy is getting this opportunity to slay the beast. I know it will all go smoothly & the hair will grow back curly!! I think we need to make t's for the day of the surgery!! You know i love you guys like family ( shoot, i like you better than some of my family!!) Monica

baby trevor's mommy said...

Monica...I LOATHE blogger sometimes! Your comment didn't come through...even went and checked the que. Oh well...

Thank you though...I love you too, hon. And Connor. I mean seriously...I'm all misty just typing it! Connor is such a kindred spirit with Trevy...and I'll always love him!


I hope that yesterday was productive...


Karen GIll said...

I thought I commented on this already...I really thought I did it from my phone. It's probably because I was hysterically crying, then I had to call my mom and read it to her and she was hysterically crying..so I might have thought I did, but didn't. I am SOO happy for you. I can't imagine the tides of emotions you are going through right now. I am with Jen..when I read this I wanted to hug you, and Trev, and hug monk. I will pray for you, for Trev, and for those GORGEOUS curls of his. His curls will be so much more spectacular when they grow back with sf'dom. I love you guys. If you need ANYTHING please don't hesitate to let me know. I love road trips.