because I need to remember - Part II

I thought it might be best to save the hard-core for last.  So I'm starting with a digital picture of the brain as offered by iTunes.  And yes...we have the app.  

Trevor only has 2:6 of the regions labeled below left in his head.  I like the soft colors though.  Makes it look less creepy and more cute n' cuddly.  

This one offers a little more detail.  Starting to look more...real.  But still with the soft pastels.  I read a psychology of colors article once that said pastels are calming.  Still feeling Zen?    

click me!

If you didn't click the image above I'm gonna sic my Italian uncles on you!  Because it gives a wonderful breakdown of the various brain controls which Trevy is missing.  You know...what he's up against.  Like missing the parts of his brain which are essential for: speech, language, hearing...even smell.  And don't forget...although his sensory and motor cortex-es are still under the curls...they've endured their own fair share of trauma.  The MST is a radical surgery in it's own rite and brings with it radical challenges.  Hence the significant right sided limp he walks with.  Understanding (if even in part) these many layers of challenges he faces, is the foundation of why I go a little psycho mommy when I feel like we're not doing enough to encourage the right brain to create new pathways and take over those functions.  He needs intensive therapy.  I think we're in a good place as far as the program that is wrapped around him goes.  But we can  need to do better.   

The gruesome is coming.  I promise.  And consider yourself forewarned.    

But first...another cartoon.  Tell your eyes and tummies that I said, You're Welcome

The next picture is not of Trevor's brain.  


It's a much closer reflection of what met my eyes when I opened those attachments for the first time.  Prepare yourself, if you're of the weak tummy persuasion. 



Enough with the suspense already. 

If you made it through all the pictures above without racing to the closest toilet.  Hand over your mouth holding your most recent meal in.  Than I have no doubt you'll be just fine scrolling down to the pictures below.

So, I'll stop wasting your time.  And filling up this post with fluff to ensure innocent eyes don't accidentally fall on something delicate tummies wouldn't approve of. 

But first let me say that...

for the record.  I am not the only Freaky Mommy out there!  

And I have the emails (and comments in Part I) to prove it! 

But enough.  

With no further adieu...I give you...

Pictures of Trevor's Left Hemisphere which was removed on October 9th, 2009, as a radical measure to rescue him from the catastrophic epilepsy, Infantile Spasms, which was attacking his developing brain thousands of times a day in the form of clusters of seizures from the time he was 7 months old until he was 2 1/2 years old.  Clusters of seizure which were intense and innumerable while he was awake.  Yet even more violent while he slept.  He found no relief until this...  

His Nightmare-Miracle. 

I warned you it would be gruesome.  I told you it looks like half a brain.  

And I have passionately testified to all who visit him here that...

 he is a miracle!  


Sinead said...

That's a lot of brain.

happy's mommy said...

Yes it is.


Anonymous said...

It is a big pile of brain for sure.

Have they done pathology on it? Any results?
Weird how it can look so 'normal' expect something to show its difference, if you know what i mean?

kt x

happy's mommy said...

The path report reflects Gray Matter Heterotopia...which is a form of Cortical Dysplasia, according to Wiki. However, if I believe my neurologist...it's a different beast. But under the same Malformation of Cortical Development umbrella. You know...the same, but different...sorta thing.

Good news though. There is a brain malformation clinic in Boston that we're supposed to be scheduling an appointment with. Hopefully they can give us insight and guidance from here.

And just because once isn't enough - I AM THRILLED about H's EEG!!!!


GB's Mom said...

I am glad there is a clinic in Boston so that you can go somewhere with this. He is, indeed, a walking miracle.

happy's mommy said...

Thanks, Momma GB


R kilby said...

Wow! That is absolutely incredible! It does look like healthy tissue, but what do I know (not being a brain surgeon and all...) Simply amazing on so many levels.

happy's mommy said...

RK...I KNEW you'd be fascinated! I think there is a weird sort of beauty in it. I don't think I could ever take a scalpel and slice into it...but I don't mind looking.


Anonymous said...

AMAZING... absolutely amazing. I LOVE to witness miracles....Thanks for sharing Danielle.
Marcia K

Sophie's Story by Elaine said...

I was surprised when I saw the pictures of Charli's brain. I never expected it to be all in one piece. If I can't get a pic of my own, I'm stealing Trevy's...since they are so much alike and all ;)

Btw, Part 1 was SOOOO powerful and emotional. You have a beautiful way of expressing yourself. And you are right...I also NEED to remember what she has been through and is still going through. Especially those times where she drives me to the breaking point.

Thanks for sharing. There was so much emotions in these last 2 posts. I know it is hard to bring yourself back to **that** day.

Jacob's Mommy said...

It's weird to be fond of a brain and at the same time hate it's guts.

Alicia said...

I have a picture of Remy's brain...Dr. Asuno showed it to us during surgery. I asked for a copy of it, but it is pre-surgery. I feel less creepy now. :)

happy's mommy said...

Marcia...in it's own weird way. Sharing is healing. For me.

Elaine...I grant you stealing rights. And it's true. Part I was VERY emotional to draw out. I don't think...really think...about our time in the hospital often. Yet somehow I felt like I was still frantic and pacing in the back hallway. I can still see the OR nurse's face. She felt terrible. She knew it would still be another 2 hours before we could see him because they hadn't waiting. PICU won't let you see the children until everything is in place. 10 hours in the surgical waiting room...followed by 2 more in the PICU waiting room. The emotions.

Jmommy...it is weird. But I'm exactly there.

Alicia...Dr. Haroki ran interference with us. I really bonded with him. Even though there is a significant communication issue. But I could feel the compassion oozing from him...and I needed that. Anyway... I have a pic of the grids on his brain. WAY less creepy. :)


Anonymous said...

Thanks D - don't think we've really absorbed it, so used to hearing bad news I guess.

Actually studying it a bit more, it does look 'smoother' so that may give a clue to dysplasia.

H's pathology came back as 'Dysempbryoplastic Neuroepithelial Tumour' or DNET for short.
Google shows it to be a non-proliferating NOT cancer type of tumour that grows in proportion with the body. They will continue to MRI & EEG him yearly for a while to check that no more tiny ones are growing as he grows. Nothing to be seen on October's EEG :)

kt x

Dora's Daddy said...

Thank you. You are inspiring...and he must be what you proclaim!

Sinead said...

Thinking about it some more: I didn't expect the blood vessels. The cute pastel brain never has blood vessels. I also didn't expect it to be in one piece. I imagined them taking out a lobe every few hours or something. Outside of the body, its simplicity hides the ugliness of what this piece of tissue inflicted on the brain and the body. It simply looks too normal for people to comprehend the great danger it posed. That it had to come out. That it was doing little if any good. That a little boy is somehow better off without it. It would be easier to understand if the tissue had horns or tentacles. Forgive my musings.

happy's mommy said...

kt...did you not know about the tumor before surgery?

Dora's D...thank you.

Sinead...I *heart* your musings.


Anonymous said...

Well we were just working on 'cortical dysplasia' or our working title 'dodgy bit' :)

Sinead is so right both about the blood vessels, i hadn't thought there would be any/so many there & about it coming out whole, that must be some serious surgery those guys do.


Mrs. M said...

It's truly amazing, isn't it?

I stole your pretty pastel brain diagrams as I've been looking for some. Hope you don't mind.Don't worry! I didn't pirate Trevy's :)

kelli- AdventurezInChildRearing said...

wow! thank you for your courage in sharing & I'm so moved and impressed by your strength. my cousins son has been suffering from seizures since early childhood & is now not able to relate with others much at all- I'm so thankful you have had a miracle- wishing they had found him his. (i've always just loved him so - he's had a very sad story) God bless these babes!