zombie dance

On the advice of Trevor's OT we were set up with a Physical Therapist evaluation this past Tuesday.

And it didn't take the seasoned (she's been doing this for a looooong time) eyes of Trevor's newest specialist to notice...

there is a definate neurological delay on his right side.

Which makes sense. All the sub-clincal activity is bouncing around his left hemisphere.

It all makes sense.

How hard he has to concentrate to clap. And then sometimes misses. How he favors his left hand. How he drags his right leg behind when he's crawling. How he'll be crusing along when suddenly it looks like his right leg just gives out and he tumbles to the ground or whacks his head on the door-jam. The way he always looks just this side of tipping over while free-walking!

And she pointed out his zombie walk. His right leg stays straight & stiff. And his little foot makes a slappy noise when it connects with the floor. And even though he walks with a limp...he still is able to walk a few steps in a row! Quite cute really!

She even showed me how he's figured out to grip the floor with his toes for balance. Clever little monkey!

And of course I started blubbering like a fool. It was the first time I've done that in front of *professionals*. I apologized and blamed it on something altogether else. Of course, she didn't believe me...and she was very uncomfortable! *smile*

It wasn't that I was suprized. Or shocked. Or overwhelmed. I mean, I've noticed some of these things myself! And in light of how well he's doing...this really isn't a big deal. Honest!

It was just the hearing it out loud. The sadness of knowing how much harder he had to fight to get his little body to work together. And the wondering what else is being affected...that isn't so obvious...

But then I looked at him. With those big blue *nothin's gonna stop me* eyes. All zombie like...and cute.

And it struck me. His tenacity.

He's my floor-grippin-with-my-toes-cause-my-feet-don't-work-right baby! And if he can be tenacious.

So can I!


~Mama Skates~ said...

u have such a way with words - i teared up reading this post

but i TOTALLY know where u're coming from....i've boo-hoo'd in the doc's office for no "real" reason, but just because someone else is finally confirming what my suspicions were....and that "maybe it's not what i'm thinking" thought is wiped from the table...it's now a confirmed, hard fact

kudos to u for loving EVERYTHING about trevy & his disabilities...they make him who he is....and y would anyone want to change that?! that which does not kill us, makes us stronger....and u know u've got one tough lil cookie right there!!! ;0)


Dawson said...

Hey guys just wanted you to know we are praying for you today. We have been talking about Trevor today and just wanted you to know we were thinking about him. Hopefully you can get a PET scan done soon and we pray for good results. Thank you for all your kind words and support you have been leaving for us.

Jeff and Allison

Reagan Leigh said...

It's so easy to get wrapped up in all of the problems and worries of what the future holds for these kiddos who have been plagued with such a serious neurological disorder as Infantile Spasms. All that being said...your family has been truly blessed in that Trevor's spasms were stopped so quickly and that developmentally he is leaps and bounds above most IS children (regardless of age). I am very happy for Trevor and all of his accomplishments; it really is amazing how far he has come. It is my hope that once we get a hold on these spasms that Reagan will be as adaptive and resilient as Trevor has been.

baby trevor's mommy said...


LOVE YOU! I knew we'd have a heart connect the first time I laid eyes on.....



Seriously tho...xoxoxo

J & A

thanks...and ditto

I hope the Epilepsy Found can help out with costs!


JSmith5780 said...

I think not enough IS families lean on the Epilepsy Foundation. Because of them we had a video monitor when we needed it. And they help with all our travel to and from Boston. And because of them Austin gets to go to summer camp this year! They are truly the best!

Shanna Grimes said...

His walk is cute though. It's a Trevy thing :) You have to just admire the little guy for his perserverence! He's not gonna give up. He isn't going to let anything stop him.

My niece is the same way. She was born at 26 weeks gestation and weighed a little over a pound. It was touch and go for the first year of her life, but that little girl is a fighter! She has mild CP, she drags her foot a little, but other than that totally fine!

I know Trev will be able overcome any developmental or physical obsticle. He has a good family and wonderful parents like you behind him 110%.

I totally know what you mean about everything just hitting you like a ton of bricks and you just have to cry and get it out. Then you pick up and go on. We all need those times. You just have to let off some of that excess steam to regulate the pressure. It gives us the strengh to pick up and go on.

Just know you have friends here to pick you up when you are feeling down.

baby trevor's mommy said...

Shanna - ((((hugs)))) Your optimism is one of the things that I love so much about you! That...and your allowing me room to be sad too! There are days when I am overwhelmed with joy over how well Trevor's doing...and hope sprouts. And then other times...when it knocks the wind out of me that his future is still uncertain. It's a tough lesson...learning to surrender Trevor's life...and release him to grow into who is meant to be. But I'm trying! And am over the moon to be surrounded by friends (like you!) who are there to celebrate & cry with me! xoxoxo...danielle

baby trevor's mommy said...

Tera - thank you for reminding me that I have so much to celebrate. You're right. Without a doubt I worry too much. It's a flaw. I am flawed.

It is my deepest hope that your pain will be lifted! And that in the meantime you'll be surrounded by family & friends to support you through. And I continue to pray for you & your beautiful baby girl!


baby trevor's mommy said...

Jen - that is SO wonderful about camp for Austin! Is it a focus specific camp? Toby's going to baseball camp...he's already counting down the days!


Sophie's Story by Elaine said...

I love reading your blog. You are so honest and have such a way with words. My heart goes out to you. I know how you feel. The sadness comes from knowing how hard our kiddos have to fight but the joy comes from seeing how their fight gets them so incredibly far. My neuro recently told me that if I had asked him when Sophie was first diagnosed if she would ever walk if she continued to have as many seizures a day as she does, he said he would have told me probably not.

baby trevor's mommy said...

Wow Elaine...your message came at exactly the right time! It's crazy (but not suprising) how bonded we feel to other IS families!


Our neuro has a tendancy towards speaking her gut...which can be good & bad *grin* But in a way...I appreciate her honesty...probably because I know how much she cares for Trevor. I think that makes a difference, ya know?


Sophie is beautiful! Your whole family is!