Thursday, July 14, 2011

Miracle for Matthew

A few weeks ago we met with Matthew's new neurologist.

I am impressed!!

Dr. K was caring, thoughtful, and thorough.  The appointment went long but not because we spent any time waiting.  They looked over Matthew time and time again.  Children's Medical in Dallas is an amazing facility.

With that one appointment we discussed med options, set up labs, talked about genetics, and set up an EEG.

That EEG took place two weeks ago.  We arrived at 10:00 am, and were escorted to our home for the next twenty-four hours.

Matthew reacted the way he normally a true rockstar.

He won the nurses over with his long eyelashes and charming grin.

We are pretty experienced in the EEG world.  We pushed our "activity" button often, and seconds later a team of nurses were there to check on us.

When we saw Dr. K the next morning, she explained what she had seen.

Matthew's right side of his brain is worse than his left.  His left has frequent activity as well, but there is no normal brain activity.  In his sleep, Matthew's brain goes a little crazy.

All of this was news we were expecting.

In saying that, it really never gets easier.

Upon leaving the hospital we started Depakote (anti-seizure med) and started weaning Phenobarbital (another anti-seizure med.)

Well folks, let me tell you something......

We have gone six days seizure free!

That's right.....


And I realize that by saying that we are tempting fate; however, we are taking our miracles where we can get them.

And this is a miracle!!!!!!

He is more alert, vocal, and even getting angry.

Yesterday he had his very first iPad experience.  He loved it so much that when it was taken away, he pursed his lips together, made an angry face, and started to whine!!!

Seriously music to my ears!!!!

Every day is a new day for us.  We know all too well how fast things can change.

But believe me there is a party in our house!!!!

1 comment:

  1. oh so excited for you. I remember when Junior started to wean from his phenobarb. He "woke up" and we were truly amazed by the changes in him. Each time we decreased the pheno we saw him wake up a bit more. Junior was on the keto diet at that time but is now off it and on Depakote. Our only Depakote side effect is low platelets(just something to keep in mind if you start to see bruising). Can't wait to hear more about Matthew and the ipad.