Skip to main content

we haven't seen him yet but...

But we received word that Dr. Neuro-Surgeon is closing now. Almost ten hours since we kissed him good bye...


They did have to preform the MST procedure. And Trevy will have a motor function deficit on his right side. The how long part varies from child to child. Even with the removal of the majority of his left hemisphere...and the MST...there is still spiking. Although Dr. EEG was quick to tell us that pre-surgery his little brain was a fire storm. Spiking every single second. Of every single day. Dr. EEG said there is a dramatic difference. And that is a good thing. I only wish my tears would believe that.


Jonathan keeps reminding me how strong and resilient Trevy is. I just keep crying.



It weird. Emotions. I felt so good all day long. I mean...after my morning cry.


But right now. In this moment. I am completely destroyed.



And if I'm gut honest. The next leg of this journey feels SO much harder than whats in the rear-view mirror...


Labels

Labels:

Comments

Ashley Potvin said…
Just wait till you hug your baby boy. That's what you need right now. Just know that everyone is hugging you in our hearts <----->
Ashley
October 9, 2009 at 3:38 PM
Anonymous said…
I'm so glad little man is through surgery but I am hurting for you that YOU hurt so. Your a mom and you've been strong for so long and you've just turned a HUGE CORNER..a lot is unknown...this is where your faith has to come in. This is where you must lean on God, talk to God, and know that God is with you and with little man every step of the way. You are an awesome mother. So weep, scream, cry, kick, tantrum like a 2 year old because you deserve it...you may even feel better. You've been given an unfair decision to make but in return you have Trevor and you are the best mother to him that he could ask for and you have made all the right decisions for him - DO NOT EVER DOUBT THAT! You will pick yourself up and in a few days you will be that tough mom fighting for him and taking care of him. That is just who YOU are!!!! I'm praying for you, for Trevor, and for God's comfort!!!
October 9, 2009 at 3:45 PM
Anonymous said…
Oh sweetie, you have been though so much with your very cutest, lovable baby boy. I hope a lot of those tears are a release of pent up emotion from years of 100's of seizures daily. Rely on your loved ones for strength and take care of yourself, food, rest and sleep. We'd all like to send Trevor kisses but that would be objectionable to him. So I wish there was a wall size piece of paper with smooch lip prints for Trevor to see at the foot of his bed. Best wishes. CB
October 9, 2009 at 3:49 PM
Anonymous said…
Trevy has enough strength and courage for you and Jonathan. Trust and faith will see everyone through this. Toby and Bristel too.
October 9, 2009 at 4:00 PM
Anonymous said…
The appeal of the rear-view mirror is JUST familiarity. Over the unknown. Add a little smoke and you will have the classic feint that fools many. Not you. The next leg will seem long, but without those seizures, miraculous.

Love, Barbara
October 9, 2009 at 4:23 PM
blogzilly said…
I don't really have any words that would make any difference. It isn't within my power. I can only say that if the next leg of the journey actually turns out to BE harder, and we don't know that it will be yet, but if it is, I and many others will remain at your virtual and physical side to help you every single step of the way.
October 9, 2009 at 4:47 PM
Lisa said…
For us, this next part was by far the scarier part. Because at least pre-surgery we knew what to expect on a daily basis. I'm sorry there was still spiking, I know that is not the ideal scenario, but to hear that there is a dramatic difference is positive. I'm hoping he bounces back as quickly as Julia has. It's really amazing what these kids are capable of.

Hoping you get to see him soon and that he starts moving that right side quickly.
October 9, 2009 at 4:52 PM
Anonymous said…
Toby says "can you tell us if Trevy has any seizures or not?"

Bristel says " Mommy thank you mommy that I just love Trevor and that I just still love you.

You mom says " I love you and thank you for giving me three wonderful, beautiful, loving grandchildren.

Praying for Trevy and that you sleep good tonight.
October 9, 2009 at 5:35 PM
Monica~ James~ Connor said…
Ok, that last comment (from your kiddos & mom) really got me. No matter what the outcome may be (& I still have FAITH that it will all work out) you made the best decision you could have made. Although I know that doesn't take away the sting of it all or the doubt or the fear of the unknown. You are the most unbelievable Mom in this world, and I admire you more than words could ever express. Trevy is so lucky to have such a fighter for his mom. Yes, the road ahead may not be clear and it may have its bumpy spots, but in the long run I think you did the right thing. i'm just so glad that the surgery is over, and hopefully you are loving on your sweet little guy as I speak.

Try to get some rest tonight, because I imagine you will need all the strength that you can stir up in the next few days. Love you, & we are all here for y'all!!
October 9, 2009 at 5:47 PM
Anonymous said…
You may have some days where you question the surgery, but the worst is definitely behind you. A little spiking can be managed with meds; the monster that was removed could not. No matter what, Trevor is going to be better off without that hemisphere. {{{{hugs}}}} to your whole family.

Erin M.
October 9, 2009 at 6:42 PM
Katy said…
SO glad it's over. Don't blame you a bit for feeling down--it's like post-partum--you've been waiting and planning for this big thing and now it's over. Besides, the UNKNOWN is so frickin' scary.
October 9, 2009 at 7:13 PM
Sinead said…
The next part is tougher than what is in the rear view mirror (and if you drive while looking in the rear view mirror you will crash the car.) Its a new day. Move forward and slowly things will fall into place.

I feel your pain tonight. I didn't realize how raw all of this still was until I sat on the sidelines today. Thank you for letting me come on the journey with you. You and your family are remarkable and I believe that good things will happen. The darkest hour is just before the dawn my friends and the next few weeks will push you in ways you cannot plan for but are strong enough for.
October 9, 2009 at 8:35 PM
Adesta said…
You have such sweet and loving children Danielle! My heart caught when I read that post!

Keeping you all in my prayers and my heart. We may not know each other personally, but I still luv u guys!!!! {hugs}
October 9, 2009 at 8:36 PM
Anonymous said…
Just plucked this from another blog, named Dura Mater.

"The Lord has said to me in the strongest terms: 'Do not think like everyone else does. Do not be afraid that some plan conceived behind closed doors will be the end of you. Do not fear anything except the Lord Almighty. He alone is the Holy One. If you fear Him, you need fear nothing else."... Isa 8:11-13 NLT
October 10, 2009 at 5:46 AM
Dora's Daddy said…
God can do all things and seeks to bring Glory to Himself through all people. We are praying for your family to have faith and the peace that surpasses understanding that frankly, we have never had to muster...But believe is available. Peace to you all and healing to Trevor!
October 10, 2009 at 5:14 PM
Post a Comment

Popular posts from this blog

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

I was talking about you today

That's right. You. Sitting there glued. To the computer screen. Getting your Trevy fix. You who hasn't been able to tear your eyes away. The one who checks back here gobs of times a day. Hanging on every post. Especially the dripping with drama or funny posts. Because you need to either laugh or cry alternately. Just like me. And somewhere...sometime...somehow...over the course of these past couple years... ...you found yourself here. Reading about me. About my family. About my Trevy. And slowly you were drawn in. Until you couldn't help yourself. You were head over heels. Unashamedly addicted. Maybe we connected in a support forum. Perhaps we're old college friends. I know we have family following. Hi guys! Some teachers and therapists. Maybe even a medical professional or two. Perhaps our kids play ball together. We might be FaceBook friends. Or you could be a friend of a friend. Even a complete stranger. But to us... you each have a very special pla...
16 comments
Read more

runaway

I tend to be a live out loud kinda girl. But sometimes... well...sometimes life is just so heavy. So intense. So overwhemling. That it brings out the recluse in me. Like lately. The thing is...I know it'll pass. It always does. And I'll learn something. Grow. Hopefully. Survive. Certainly. Because I have to. It's just right now. In this particular heavy moment. I would much rather run away to some tropical paradise and sip martinis until Jonathan calls to tell me Trevy's back at home. Happy. And seizure free. With a new head of curls covering the scar and bouncing around the house. I am a coward after all. I've never denied that. And I really don't want to live through this next month. Which is probably why my posts will be random. At best.
15 comments
Read more