ACTION video of Tay!

Taylor is still experiencing a few seizures every day, but his energy and action are uncontrollable!
Here's a video of what Taylor is doing every minute he's awake these days:
www.youtube.com/watch?v=OZYu8EdauoU 

We're thrilled, seeing as how he's been fairly floppy the last few months.  At this rate, we'll have to baby-proof the house soon!

Tay's 1st Braves Game !

Saturday evening Taylor attended his 1st Brave's game!  The weather was quite pleasant.  Taylor enjoyed the constant action, the cheers, and all the bright lights from the jumbotrons and fireworks.  Taylor just completed his 5th day on Vigabatrin and he's had some very good days.  Unfortunately the seizures haven't  ceased yet.  Many families say the drug usually takes at least 10 days to take it's full effect.

However, Vigabatrin has definitely unleashed Taylor's energy.  We've never seen him so active...even before the seizures.  He's constantly rolling over, pushing himself up with his arms, grabbing things and using his legs to propel himself around the floor...all the while babbling and yabbling away.

Tay wasn't happy about the Cardinals scoring...

ACTH Out....Vigabatrin In

We are weening Taylor off of the ACTH shots and moving on to Vigabatrin, an oral anti-epileptic drug.  ACTH seems to have knocked out a fair portion of his seizures, but we're 4+ weeks into the treatment and still seeing at least 8 a day.  Many children have found success with Vigabatrin when ACTH didn't work for them initially.  The side effects can be more severe, but we're praying for the best.

The last week has been a bit of a roller coaster with Taylor's moods.  He has definitely become more irritable and his appetite has become voracious.  His new game is to demand a full meal at 1am.....and then another at 5am....definitely reverting back to his newborn days.  Mom, Dad & Nina have all learned to make a bottle while sleepwalking.  :)
Here's a picture of our chunky monkey taking a little snooze:

Yes...bad hair day.

Improvement, but not out of the woods yet

Our neurologist reviewed the EEG and there has been much improvement in his brainwave activity.  However, it has not completely normalized yet, especially during his sleeping hours.  Starting today, his steroid intake will be cut in half....only 1 shot a day!
We'll have another EEG next Friday.  The outcome of the results will determine if we stay with the current steroid or swtich to another drug. 
Lane's mom has been in town the last 8 days and has been a huge help with everything.  Thanks Nina!  And a huge Thank You goes out to Dick Taylor for lending her to us for the extended stay!  :)
love to you all.

EEG pic in action...

No News is Good News...

Our neurologist will be reviewing Taylor's EEG charts tomorrow morning and we'll have a conference call with him in the afternoon to discuss the results.  The improvements we've seen in Taylor over the last 6 days have greatly eased our tensions.  For instance, over the last six months we've average 3 soiled burp cloths per day from Taylor's spit-ups.  In the last 6 days, we haven't even used one.  His general demeanor of late has been cool, calm and content with an appetite like a competitive hotdog eater!
...look for an update tomorrow night.

Look mommy, I'm not in the hospital!

Knock on wood, but it's the first weekend in 3 weeks we're not checked into Chateau de la Hospitale!
(yes, Travis, I know that's not grammatically correct)
We are 23 needle-sticks into the steroid treatments.  We don't want to get too optimistic at this early stage, but the past few days have been fairly decent for Taylor.  He is still having seizures, but the total number and severity of them have decreased noticeably.

We're keeping a detailed daily chart of everything that occurs.  Our next EEG is on Wednesday.  This will help us understand if his brainwaves have become less erratic since last Sunday.  The goal over the next several weeks is to completely suppress his seizures and normalize his brainwaves so he can return to learning the fun stuff in life.

The steroids have definitely increased Tay's appetite.  He's racking up the pounds by the minute, so you may not recognize our little sumo wrestler next time you see him.  :)

Taylor appreciates your continued concern.
more to come...