9.03.2008

I reserve the right

So after Dr. M-the-annoying looked at the clip & said he really thought it was just a tic...


I mentally told myself to relax.


And I've been working really hard at it.


After a restless nights sleep...I actually started to feel silly. And even a little irked that I let myself get so worked up.


But then this morning...







I know the movements are subtle.

I even asked J last night

what if I've just been looking so hard that I actually found something?

He told me I was nuts. He witnessed it too. And his heart joined mine...

on the floor.

The movements are real. Not my imagination. And obviously involuntary. And always to the right.

Which is why I just can't shake the feeling that it's connected...

connected to the activity in his left hemi...

I just NEED to know what it means!

Sometimes I fantasize about clawing the badness out of his little brain with my bare hands...







I hope to God the doctors laugh about Trevy's Crazy Mommy. Blog about me...I don't care...

But please God...

And until they do...I reserve the right to be a little psycho...

particularly when it comes to Trevy.

8 comments:

Monica, James, Connor McGuire said...

My heart just breaks for your family. It is definitely more noticeable in today's videos. He reminds me so much of Connor in how he just looks at you with those big beautiful eyes as if he's asking you why. It kills me to see it. I pray that you get some answers soon. I also pray that we are all just crazy too! Much love to you & little Trevy! i have to admit I was kind of laughing how he was watching his brother & sister run around...as if to say who are these monkeys???

baby trevor's mommy said...

I laughed too when I realized my kids were going bonkers in the background!

I'm still waiting to hear from the doctor. Our reg. neuro is back in the office tomorrow...so maybe they're putting it back on her plate? I don't know...but I have the biggest stress headache. Ugh!

I agree...Connor & Trevy are two peas in a pod!

...danielle

Shanna Grimes said...

Oh Danielle, that is disappointing. It is definitely more noticeable in this video clip. It's pretty indisputable that it is something.

What was alarming was not just the look to the right, but the "blank" look you could see just as his eyes are turning right. They seem to do kind of a slightly upward shift. Is it just me? I don't want to alarm you or anything, but I am sure you have seen much more than we are seeing. Since you are posting the video I was guessing you were seeking further affirmation from trusted friends.

Yes, it is possible it's a tick, but in a child this young? Is ticking typical in a 16 month old? Also, what is causing the tick?

My HS sweetie had Tourette's Syndrome and had a similar tick. Ticking is a fairly regular part of our life, since Javi has many ticks and self regulatory behaviors. Nothing wrong with a tick here and there. We all have our little ticks :)

I hope you find the answers you are looking for soon. Hang in there, hon! You are a crazy psycho mom, but we love ya! You must be with your kids going bonkers in the background!! Just kidding :)

Hey, if you don't speak up for T, who will??

baby trevor's mommy said...

Shanna...I love you too! I suppose in a way I wanted affirmation. Or at least for you guys to know I'm not a complete nut job! *smile* Then again...the more that I hear you guys see it too...the harder I cry. Go figure. The part that grips my heart every time is that blank look. It's always been his eyes that kill me. That's why I can't sleep...I close my eyes and his haunt me. I just want the friggin' doctor to read the EEG and tell me. Our reg neuro is back in office today...which is a huge relief.

Anyway...I love you sis!

...danielle

~Mama Skates~ said...

we know u're not a complete nut job and u have every right to b a little psycho when it comes to ur kids - i tell curtis that all the time...other parents/teachers/doctors can call me whatever they want - but when it comes to MY kiddos, i'm going above & beyond to make sure they're getting what's best for them! i had a hard time picking it up in ur clip the other day, but definitely see it in these - i don't want to make u cry more, i just want u to know that it's not just something u "found" - it's u being a good mama & noticing when something isn't right with ur baby....my heart aches for u & i have tears streaming down my face for u right now! i'm praying for u and ur family & know that God will carry u through this! He definitely blessed the right parents with little trevy!!!

xoxoxoxox,
sharon

Marissa said...

You're the mom- you know. Don't let them second guess what you see, and what you've taped.

Anonymous said...

Hi Danielle. I know your pain. Ryan's seizures came back 3 months after ACTH:-( I hope you hear back from the doctors soon. I keep my fingers crossed for you!

Erin

Mmmmaaahvelous said...

Of course you have the right to be a "little psycho"! That's a mother's right! Always go with your instinct, your gut (I hate that word but it works), that nagging voice in your head. It's God at work, don't you think? Your intuition. Always right.
So sorry that you all are dealing with this again.
M