Tuesday, September 25, 2012

Boy on Fire

Our neurologists often told us that once a child's seizures are controlled, their development suddenly starts back up again.  When a brain is constantly under fire, it tries to protect itself.  It doesn't grow or make new connections.  It knows to keep things status quo to avoid any damage.

We've tried a number of epilepsy drug combinations.  We've had Will evaluated for seizure surgeries and diets.  The drugs weren't working and his seizures were getting worse.  While we contemplated next steps, we started Will on a medicine with some pretty sleepy side effects - phenobarbital.  A lot of people don't tolerate it because it makes them tired and lethargic all the time and they can't function.  Will is usually a bit crabby, so we were concerned that the phenobarb would make him feel worse.  Thankfully he is tolerating it well.  We've even been able to start weaning him off of one of those other seizure drugs that don't seem to have an effect his seizures.

I've held off posting anything until now because I don't want to jinx anything... but I just can't keep it in anymore.  Will's last seizure was his second day on phenobarbital - before it had time to take effect.  And that was more than a month ago.  He has been sleeping well and through the night (a good side effect of taking a drug that makes you sleepy right before bed time!).  And aside from a brief bout with a sinus infection, he has been doing amazingly well.  Even through that illness, he remained seizure free.

Its ok to cheer outloud if you want to.  I sure am.

So since Will's seizures seem to finally be under some type of control, his development has started back up again.  Baby steps.  First he started tolerating walking with assistance at physical therapy.  Then he started chatting and interacting... he started saying "hi" when you say it to him first!  And finally, the kicker... all of a sudden in the past 2 weeks, he LIKES his gait trainer.

A gait trainer is a walking aid.  It holds Will up vertically, has a little bicycle-type seat for him to sit on, and has big wheels to help him motor around.  We have had it for more than a year.  Up to this moment, Will has hated it.  HATED.  And I know that's a strong word.

But our incredible nursing assistant Nicole saw Will's development, and took it upon herself to take the gait trainer out of its dusty closet confines and gave it another whirl with Will.  They started small.  A few steps in the house.  She cheered him on and he didn't scream, so they tried more.  With a little bit of assistance, Will and Nicole started taking walks around the house together.  And just today, they took the gait trainer outside, and Will walked UP the hill in the sunshine, smiling as he took his first ever walk outside.

Its ok to cheer outloud again.  And then get a tissue and wipe your eyes... because I bet you're just as excited for and proud of this kid as we are.

If you get the blog update via email, please visit our web address at www.ncslaviks.blogspot.com to view a video that I took of Will and Nicole walking down a long hallway in our house.  What an amazing kid.  Who knows where he's going to go now that his brain has a reprieve from these seizures... I have a feeling its going to amaze us all even more.


Julie Gagnon said...

That is so awesome!! So happy things are moving along...pun intended! Hugs!

Allison said...

I love reading blogs like this to start the day. They remind us that so much is achievable by our kids. I also know what you mean about not wanting to jinx things. But celebrate now because we all know this is out of our control. Happy to hear he is tolerating the pheno well. That is a tricky one for sure. Seizures are garbage. Wish we could throw them all out.

Sylvia Phillips said...

I am cheering right along with you!!! Yay!! We have been playing the seizure game since 2000 when our then 2 yr old was diagnosed with brain cancer!

Sylvia Phillips said...

BTW you've got yourself a lovely bunch of boys!!