So let me tackle the who's the puppy for topic first. Especially since I've had SO much feedback. Can you believe over 100 votes?! We do love our opinions...don't we?!
::wink::
Everybody can relax. The puppy will be for the WHOLE family...not just Trevy. Don't you know me well enough by now to recognize a manipulation tactic when I type one? I was simply trying to inflate the "yes" vote by playing the "I survived radical brain surgery and totally deserve a puppy" card!
By the way...daddy finally said YES!
**********
On to the next topic...
The Questions
dum...dum...dum...dum...duuuuuuuuuuuuum
Oh have we ever been asked some interesting questions since Trevy's surgery.
For instance...
Is he having a bad hair day?
Or how about...
Will it grow back?
Ummmmmm...
it as in his brain?
Yes!
Hmmmmmm...
Wow.
I'm not really sure how to answer that...
I don't know? Is he half lizard?
NO it won't grow back! And yes...I was rolling my eyes!
A lot of people are curious if Trevy is cured.
That's a legitimate but tuffy to answer. Right now he is seizure free. And we are celebrating that with all our hearts.
But cured?
No. Not really.
Trevy's (and all of his seizure buddies who've had radical brain surgery) reality is...he will always be prone to seizures. We are passionately hoping that should seizures resurface...they will be med responsive.
Polar opposite of The Spasms.
But right now. Today. Because we're trying really hard to take it day by day. We're just thrilled watching him absorb new things all the time! In the words of Toby...it's been astonishing...watching Trevy's potential blossom these past few weeks! His PT was saying the other day how after her initial post surgery eval she was already looking into Gait Trainers for Trevor. Today? Before she had a chance to place her order. He's not just walking...he's RUNNING! Much to my dismay...my mommy-ness doesn't like how close he cuts those corners. I'm sure his Guardian Angel feels the same! He's an imitating fool too! I sneeze...he sneezes. I cough...he coughs. I laugh...he laughs. I say banana...he says baaa...baaaa. I ask are you hungry...he signs and says eeeeeee. Yesterday I was feeding him goldfish...and unprompted he signed cracker! I give all the praise to Miss. Rachel and the Signing Time gang! I say kiss...he says mmmmmmmuah then puckers his lips and slips out his tongue right before contact! I say hug...he comes to me and opens his arms! I ask him to get a chewie...he goes to his chewie basket and gets one. Looking a lot like Stitch making munching motions with his chompers the whole way there and back! All this (and more) from a child who possibly understood 10% of the language we tried to share with him before surgery. Probably understood less. According to his pre-surgery neuro psyche eval he was functioning close to 8 months of age in receptive/expressive speech. It's like I told Dr. Neuro the other day. It's just a million little things that in and of themselves are really not that noticeable. But when you put them all together? Miraculous!
So is he cured? No.
Did he wake up with half his brain in a Path Lab and suddenly become a typical approaching 3 year old? No.
Does he have a HUGE mountain of development to climb? Yes.
Do I think he can do it?
For the first time...in a very looooooooong time...
My heart is soaring with hope that YES he can!
::wink::
Everybody can relax. The puppy will be for the WHOLE family...not just Trevy. Don't you know me well enough by now to recognize a manipulation tactic when I type one? I was simply trying to inflate the "yes" vote by playing the "I survived radical brain surgery and totally deserve a puppy" card!
By the way...daddy finally said YES!
**********
On to the next topic...
The Questions
dum...dum...dum...dum...duuuuuuuuuuuuum
Oh have we ever been asked some interesting questions since Trevy's surgery.
For instance...
Is he having a bad hair day?
Or how about...
Will it grow back?
Ummmmmm...
it as in his brain?
Yes!
Hmmmmmm...
Wow.
I'm not really sure how to answer that...
I don't know? Is he half lizard?
NO it won't grow back! And yes...I was rolling my eyes!
A lot of people are curious if Trevy is cured.
That's a legitimate but tuffy to answer. Right now he is seizure free. And we are celebrating that with all our hearts.
But cured?
No. Not really.
Trevy's (and all of his seizure buddies who've had radical brain surgery) reality is...he will always be prone to seizures. We are passionately hoping that should seizures resurface...they will be med responsive.
Polar opposite of The Spasms.
But right now. Today. Because we're trying really hard to take it day by day. We're just thrilled watching him absorb new things all the time! In the words of Toby...it's been astonishing...watching Trevy's potential blossom these past few weeks! His PT was saying the other day how after her initial post surgery eval she was already looking into Gait Trainers for Trevor. Today? Before she had a chance to place her order. He's not just walking...he's RUNNING! Much to my dismay...my mommy-ness doesn't like how close he cuts those corners. I'm sure his Guardian Angel feels the same! He's an imitating fool too! I sneeze...he sneezes. I cough...he coughs. I laugh...he laughs. I say banana...he says baaa...baaaa. I ask are you hungry...he signs and says eeeeeee. Yesterday I was feeding him goldfish...and unprompted he signed cracker! I give all the praise to Miss. Rachel and the Signing Time gang! I say kiss...he says mmmmmmmuah then puckers his lips and slips out his tongue right before contact! I say hug...he comes to me and opens his arms! I ask him to get a chewie...he goes to his chewie basket and gets one. Looking a lot like Stitch making munching motions with his chompers the whole way there and back! All this (and more) from a child who possibly understood 10% of the language we tried to share with him before surgery. Probably understood less. According to his pre-surgery neuro psyche eval he was functioning close to 8 months of age in receptive/expressive speech. It's like I told Dr. Neuro the other day. It's just a million little things that in and of themselves are really not that noticeable. But when you put them all together? Miraculous!
So is he cured? No.
Did he wake up with half his brain in a Path Lab and suddenly become a typical approaching 3 year old? No.
Does he have a HUGE mountain of development to climb? Yes.
Do I think he can do it?
For the first time...in a very looooooooong time...
My heart is soaring with hope that YES he can!
Comments
I had to chuckle at the "my mommy-ness don't like how close he cuts those corners" comment. It tells me that he's being more of a typical three yr old and that makes me happy for you all. I love the fact that he's imitating and chuckled out loud that he sticks his tongue out right before he kisses you!! That's so cute! aahh...kids....
While I'm sure your lives are still hectic with watching his every move, I'm also thinking that a big weight has been lifted off your shoulders by this surgery.
I wish you all continued happiness and progression.
Have a WONDERFUL Thanksgiving! I will say a special thanks to God this week for the successful surgery of all the kids who have received the brain surgery to help rid them of the IS monster. You all certainly have a lot to be thankful for this year!
{hugs}
So which puppy is it???
Erin M.
I'm glad Trevor's doing so well. Keep on dreaming and hoping.
Way to go Trevy!
I've always wondered about the "cured" thing too. At what point to you cease to have epilepsy? Or is it like being an alcoholic, where it goes into a sort of remission, but always lurking under the surface?
Where did you get you signing time videos?
Only the miraculous part shows daily.
I'm hoping you will weigh-in on the free online conferences at the World Disability Congress...that you heard and watched, right?
It will be a while before I mention it in a post. Really want a parent response.
Barbara
I say, "never say never with our kids". They get counted out so often, but the changes to cognition that can occur with seizure cessation is just amazing.
My personal belief is epilepsy is never cured. Unfortunately all our kids are more at risk for seizures their entire lives. I don't think I will ever rest easy in regards to Austin. He may forget about it, but this mommy never will.
Want to be comparing notes soon!
(oh and still waiting for more pics!!!)
(Katy D here, can't sign in!)
I guess we don't have to ask how Thanksgiving will be in YOUR home this year....
Your child is a true miracle, and we are all so grateful for that...Trevor is making such remarkable progress....
Hopefully, one day you will simply forget that "The Beast" ever existed!!!
Blessings....
Cyndi