Taylor Turns 1 !!!

Taylor turned 1 November 2- no more Baby Taylor…he’s now called Taylor the Toddler J  We can’t thank everyone enough for their generous birthday present and donation to Tay’s Medical fund.  Chris and I were surprised and overwhelmed…to say the least.  Special thank you to Gene and Isabel for putting this together and for all of the support and love they have given us. 

We met with the neurologist last Wednesday. He has tweaked the dosage levels and combination of medicines again.  Hopefully soon we’ll find the right mix to stop the spasms and help Taylor get to a better place.  He sure is ready to start learning the fun stuff in life.  

December 13^th we’re headed to Memphis to see one of the top Infantile Spasm specialists in the world.  He is at Le Bonheur Children’s Hospital.  Taylor will be wired for a week long EEG.  This will allow them to fully analyze his brainwaves during the different cycles of his day.  The doctors in Memphis will then work with our neurologist here in Atlanta to formulate a strategy for the next several months.

Even with everything going on, Taylor continues to be a strong little boy.  You can see his determination in everything he does.  Please see the link below to his latest pictures of Halloween and the birthday party:

CLICK HERE FOR PICTURES

"Thank you all once again for making my birthday so special." -Tay

3rd One a Charm?

Last night, Taylor started his 3rd major anti-seizure drug, Topamax.  Last Wed, Taylor had an 8 hour EEG.  The neurologist said he noticed 4 seizures during the procedure so we're shifting gears to try and knock out these last few remaining spasms. 
Check back soon for a few great videos....we'll upload them this weekend. 
Keep your prayers coming...Tay's not out of the woods yet.

                                          "Thanks for my Halloween Costume Aunt Marilyn!" -Tay

You'll Want to See These Pictures! :)

Click on this link to view slideshow:
http://www.kodakgallery.com/gallery/sharing/shareRedirectSwitchBoard.jsp?token=696534162408%3A2050381736&sourceId=533754321803&cm_mmc=eMail-_-Share-_-Photos-_-Sharee 

GREAT PROGRESS !

Taylor unveils his
Fall Fashion
Tips!

It has been 7 days since we started infusing Klonipon, another anti-seizure drug, in with the Vigabatrin Taylor has been taking.  He has responded very well to the combination of the two.  Some days it seems he has no seizures at all.  And the seizures we think we see, have just a small fraction of the intensity of the ones a week ago.  Taylor is sleeping through the night again and his appetite for food is waaaay down, so some of the pudge and chunk seem to be falling away.  He's beginning to get his knees underneath him, track objects, focus more intently and grab a bit for hanging objects.  Milestones we're thrilled about! 

This Sunday is the Buddy Walk for the Down Syndrome Society of Atlanta.  We have plans to attend and walk with a family that's been coaching us through this ordeal.  Their daughter, Hannah, also has Downs and went through the Infantile Spasms situation a year ago.  <see pic of Hannah below>  Hannah is now seizure-free and leading an extraordinary life....and she's darn cute too!

Taylor continues to appreciate your Love and support.
Thank you.

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.