12.04.2009

we survived (a picture marathon and a bit more)

None of this seizure business is cake.



But somehow having Jonathan by my side has always made it easier.



Not having him by my side was horrible!



But no worries...I've complained enough about it to feel better. A smidge. I'm running an experiment to see just how much my complaining earns me. It was pizza for dinner last night!



::smile::



The hook-up (that's when the technicians paste the leads all over his head) is always a tuffy to endure. I can't even imagine how scary it must feel. To have strangers yanking and tugging and rubbing and pasting circles with long wires to your head. Connected to a contraption that'll be shoved in a backpack and lugged around by you. All while being held down by your protector...mommy! Trevy has never been an easy distraction. The louder we'd sing his favorite songs...the more ear piercing the screams. This EEG was slightly different though.



No...he didn't sing Twinkle Twinkle with me...



Buuuuuut...



Crocodile tears streaming (it's usually just angry tearless crying) Trevy was not just reaching for me...



He was calling my name!



Mama! Mama! Mama!



In the past he clearly communicated that he wanted me to rescue him. But he never ever not even once...



called my name!



Made my shattered heart soar...




The drama always dials down once he's all hooked up. And being mommy snuggled. Settled in our room.




He learned quickly that if he stood in the window. Licking it, mind you. Pick your battles...right. Anyway...if he stood there looking cute. Slobber making rivers to the floor. The white coats or holiday scrubs would come play peek-a-boo...







The toys, two wonderful therapist visits and peek-a-boos worked for about 34 hours.





Then came the meltdown.



Trevy has never gone that bizerk during an EEG before. He was screaming and ripping at his turban. Found the rainbow ponytail of wires behind him and was tearing at them too.


Nothing we did was soothing him! He'd absolutely had enough!


And spent two hours letting me know about it!





Until he finally fell into an exhausted sleep.


He was looking peaceful and angelic all snuggled up in my arms. When Dr. Neuro came to discuss the EEG findings. And where we go from here.



His EEG was not spike free. But...she said. I know Trevor's EEG...and it looks GREAT!


The concern we shared was that the spikes are originating not from the right sided blip...but from the central region. More specifically...the little left sided island of brain we chose to leave inside. For the sake of his motor/sensory skills. Weird as it may sound...I'd feel a little relief it they were emanating from the right side. Beyond my control side. Not the area that I begged the doctors to leave in! I'm trying really hard not to think about having to GroundHog Day the last two months. That between the MST and increasing his Dilantin those spikes will be held at bay. And the Monster who hides inside them.


We both agreed that we just need to ride through the next handful of years. The most important years of brain development. And that the side effects of Dilantin are less risky...than the seizures they suppress. Especially given many of the most dangerous side effects are only incurred after long-term use.


By the way...I learned that Trileptal and Dilantin work against each other. Which is why he really shouldn't stay on both long term. I didn't understand all the doctor-speak. But at least now it makes a little more sense.


Dr. Neuro and I have a very tight bond. Very tight. Been with us since the beginning tight. Cried together tight. And we spent a good hour discussing this and that about Trevor and Life in general.


When she was finally paged away I felt so encouraged. And at Peace. And proud that I'd made it through the whose sha-bang almost entirely by myself!


I have no idea how Trevor's Life is going to Flow from here. Neither does she. In fact...she told me that she could not promise an IS relapse was impossible. But she could that we would do everything we can to prevent it. And to support Trevy fully.


My heart needed that (stupid) EEG. And time with Dr. Neuro. To help digest that Trevy's future is as uncertain as it has ever been. (For those that piously think...just like everybody's. Let's be honest. There is a very real difference between my mommy worries over Toby & Bristel...and Trevor) I know that. But I also know that we are Exactly Where we are Supposed to be. With the right people surrounding our family...


and our son.



Wow...this post took a turn for the mushy.



::smile::



Exhaustion brings out my mushy. So today I'm feeling very mushy. And Peaceful. And more grounded in knowing that Trevy's future was never mine to begin with...



it will Flow exactly as it has already been written...



I'm just lucky enough to be along for the ride.

16 comments:

Bacon Wife said...

As usual, i had been stalking your site all day for an update!;o)
I have such a range of emotion but the fact that you feel at peace and that the EEG helped you, then that's all that matters.
((((HUG)))

love you bunches!
Connie

Anonymous said...

Glad you survived and got some much needed information. Yep, the uncertainty is probably one of the hardest parts of being a mom of a "special" child. Live day to day, right??!!

And gosh, if Trevy isn't the cutest little guy even in a turban!!

Hugs,
Sheila

Anonymous said...

Love the photos, he's such a cutie! :)

Glad you all got through it and you had lots of time with the Doctor to talk things through.

((hugs))

KT x

& PS. I got asked the 'will it grow back?' question last night...

JSmith5780 said...

Best EEG ever??

What an awesoem Xmas gift. Of course completely normal would ahve been an awesome gift too, but take what you can get.

I'd ask for dinner AND dessert tonight :)

Lisa said...

I'm so glad his EEG is vastly improved...and yes, the worries we have over our kids is by far the hardest part of this whole shebang...never a day goes by that I don't think of J's future and worry.

I think what you saw is probably what we are dealing with too. Unfortunately. Boo.

MJStump said...

I think it is so tough for many of us to accept that it is out of our hands...it looks like you are doing a great job of seeing, knowing and feeling the reality of that.

it will Flow exactly as it has already been written...

I'm just lucky enough to be along for the ride

WOW...that is so profound, and such a great way to look at everything. Something we all should learn from.

So much love, hugs, and prayers for you guys!
Jody

KC's Mama said...

Beautiful insight. Words to live by. I need to take a page from your book and remember that I do not hold KC's future in my hands, as much as it sometimes feels that way.
I'm so happy for you, Mama ; )

Love Karen

Sinead said...

It's a good EEG. It's not a perfect EEG. I think the spikes are there to remind us to be ever vigilant and take nothing for granted. It's not the best way to be but that became our journey when IS visited our homes. There is no one that is truly ever out of the woods. I view this as I view the terror alerts. No one will ever say that our threat level is green but at some point we will go on living our lives as if it is. I feel sad for Trevor and his EEG tears even though I recognize it as yet another great sign of how normal his brain is becoming. He's made tremendous progress Danielle. Much more so than Emma and yet I am pleased with her progress.

No it's not the same uncertainty as Bristel and Toby but it never was. You've come so far. It is awesome. It is really awesome. Cause not everyone gets this chance.

Sinead said...

It's a good EEG. It's not a perfect EEG. I think the spikes are there to remind us to be ever vigilant and take nothing for granted. It's not the best way to be but that became our journey when IS visited our homes. There is no one that is truly ever out of the woods. I view this as I view the terror alerts. No one will ever say that our threat level is green but at some point we will go on living our lives as if it is. I feel sad for Trevor and his EEG tears even though I recognize it as yet another great sign of how normal his brain is becoming. He's made tremendous progress Danielle. Much more so than Emma and yet I am pleased with her progress.

No it's not the same uncertainty as Bristel and Toby but it never was. You've come so far. It is awesome. It is really awesome. Cause not everyone gets this chance.

baby trevor's mommy said...

Connie...love you too, hon.

Shelia...I keep telling them he should be the hospital model. The face of the EEG depot!

KT...tick tock! How're you holding up? I thought of you the other day...a UK family posted that they have a date for their little one's hemi surgery.

Jen...he brought home ice cream!

Lisa...I'm so sorry, hon. It just sucks that we're only a couple of months out...I was hoping for at least six.

Jody...love you and your sweetness! But listen...so today was a good happy day. Tomorrow...I may be Miss. Potty Mouth! ;)

Karen...(((((((((hugs)))))))) I know you know this...but you are KC's perfect mommy fit! And our kiddos are always teaching us!

Sinead...so true. So true!

...danielle

Colby said...

"Mama"....Are there any more beautiful words in the English language?

Wow!!!!

I know those words helped temper the "not perfect" EEG results...But all in all, it looks like your boy is doing well...

I play the "at least it's not" game all the time....

So the spikes Trevor is dealing with now?...."At least it's not" hundreds every day anymore....

Love y'all!

What a role model you are....And how perfectly you continue to express yourself.....

Cyndi

Colby said...

P.S. Congratulations on doing such a wonderful "solo" performance...I KNOW how hard it is without a partner there.....

Cyndi

Anonymous said...

Hey Danielle, we're holding up, just, thanks.
Really not long to go now, everytime anyone mentions Christmas I think, it'll be over by then :)

Bet your three are getting excited now, kt x

therextras said...

This update is like a, no, it is a gift. Thanks, danielle!

Barbara

Adesta said...

I have to agree with Sinead. There are spikes there to remind you to never forget what Trevy went through. Not that you could ever forget, but it's HIS way of getting the word out to other people, like me, who knew nothing about IS until Trevy and Austin.

My heart soared when I read that he was calling for you at the same time my heart felt so heavy for Trevy and his tears. But...as always, he showed just how tough he is. And I can't believe he was trying to yank off the wires!! I think my heart would have stopped had I been there!!!

Ian Marrey said...

that was a rollercoaster of a blog even by your standards.

nothing comes close to being called to though. wow.