Happy Easter Everyone !

Happy Easter Everyone!
Tay's situation is still exactly as it was when we left the hospital last month.  He's still having between 5-10 seizures a day, but they don't seem to be hurting him like they were.  He's still very active and happy most of the day.

We continue to increase his medication in hopes of finding the right "therapeutic" dose.  We're officially 14 days from Mr. Chance's due date.  :)
Thanks for your continued prayers.

Headed Home Tomorrow!

Tay is better but not seizure free. We've worked up a game plan for the next few weeks we can execute from home. We'll monitor how things progress and follow up with our Memphis docs weekly via phone.

They tell us the type of seizure Tay is experiencing isn't the same as the catastrophic kind he experienced 18 months ago. While that's positive news, our goal is still to get them to cease as soon as possible.

Thanks for everyone's support, love and prayers.

Holding Steady...

Day 5 in Le Bonheur hospital is coming to a close. Taylor has had 9 seizures today, thankfully most haven't been painful for him.

We're currently at the highest level of Depakote possible so today we added a small dose of another anti-seizure drug, zonegram, to try to improve the results.

Our main Neurologist returns from vacation tomorrow so it will be nice to get his opinion on what our next steps should be in order for Taylor to "normalize" his brain wave pattern.
Hopefully our next post will contain positive news.
Best regards to all who have been praying for Taylor's recovery.

Tay's Seizures Return :(

After being seizure-free for over a year, last week Taylor's seizures returned.  The first few days they were so slight and unnoticeable, we thought he was just losing his balance.  Last Saturday and Sunday, we directly saw a few "twitches" that scared us so we called the neurologist in Memphis.  He told us the Epilepsy Montioring Unit was pretty booked, but he could probably squeeze us in on Wed.  

It's a good thing we went when we did.  We checked in at 8am Wed morning.  That day was a nightmare for Taylor.  We recorded 34 seizures, many of which were extremely painful for him.  We started his drug treatments at 2pm and slowly increased the dosage over a 24hr period.  (same drug - Depakote- that cured him a year ago)  We've seen a steady improvement:
Wed - 34
Thurs - 14
Fri - 8
Today so far... 2  (3pm now)

We will most likely stay here another day or two.  We'd like to feel confident that we're on the right track before we unglue the 26 electrodes from his head.  Lane is 35 weeks pregnant and handling everything much better than I am :)
With a little Irish luck and plenty of Faith, Tay will be healed very soon and back in Atlanta with his two favorite pups.  He doesn't have much time to build up his strength before his little brother, Chance, comes storming into his world!

Happy St Patty's day all.
Love, Lane Chris & Tay

G I G G L E F E S T !!!!!!!!!!!

Sorry for not updating in a while, but Taylor is still doing well.  No seizures.
This video should speak for itself!

CLICK HERE FOR VIDEO

Taylor misses you all very much.  Hope to see you soon.

Taylor Enjoyed His Weekend in Charleston...

Taylor remains seizure free! 
We spent the weekend in sunny Charleston celebrating my father's retirement.  Everyone was able to soak up plenty of quality Taylor time.  The travel was brutal, but Taylor handled it like a champ.
Love you all.

Some Videos to Cheer You Up...

Here are 3 Videos to Cheer Up Your Day:

1) Happy Eater 
www.youtube.com/watch?v=HsiHUM7q-BQ 

2) Spring Car Ride # 2
www.youtube.com/watch?v=lBZdWfvCTE0 

3) Pensive Foot Play
www.youtube.com/watch?v=euU7PktLFSY

H A P P Y ST P A T T Y ' S D A Y

Still seizure free! :)

Taylor is working hard every day to rebuild his head control and motor skills.  We're very proud of his progress and we see great things for him in the future.  He can't wait to see all of you and show off his 5 new teeth.

Love you all and we promise to post a fun video soon.

Tay Makes a Big Splash at GiGi's Gala Fundraiser

Taylor's buddy - Jamal Anderson

Tonight was a special night.

We attended a fundraiser for GiGi's Playhouse.  There are currently 8 in the U.S. and in 2 months, our friend Adrienne Mulligan will be opening the 9th in Atlanta.  GiGi's Playhouses are Down syndrome awareness and educational centers that provide resources, specialized teaching, and support to individuals with Down syndrome, their families and the community...all for free.  (www.GiGisPlayhouse.org) 

Taylor looks forward to introducing you to GiGi's next time you visit.

:)

Time to Celebrate - Absolute Best News From Memphis !

We received the best news from our appointment in Memphis yesterday.  The doctors there are pretty amazing.  Taylor had his EEG at 8:30am.  By 10:30, the docs had studied the entire report and gave us the good news...Taylor's EEG was perfect! 

If he continues along this track, they believe he can start weening off the anti-seizure medicine in 6 months.  I'll let Taylor show you how happy he was to hear the news...
We took this video just as we exited off the interstate last night, just a few blocks from home.  The weather was perfect so we rolled Tay's window down so he could enjoy the breeze:

CLICK HERE TO SEE TAYLOR CELEBRATING

Tay is Happy As Can Be!

Taylor hasn't had a seizure since that single episode on Jan 30th.  He continues to learn new skills, many which involve his fine motor skills.

It's such a nice feeling, tucking Taylor into bed at night knowing that he had an incredible day.  Being able to watch the true little boy come out of his shell from this "seizure coma" he's been in for so long.  It sure takes a lot of stress out of our lives.  :)

We're headed back to Memphis tomorrow for his check-up on Monday.  We'll be sure to fill you in after we know more.  In the meantime, check out this video we recorded tonight:

CLICK HERE FOR VIDEO

2 Videos to Brighten Your Day

BUBBLES:

http://www.youtube.com/watch?v=DIj0-NGVpSY

MY NEW BIG BOY CHAIR

http://www.youtube.com/watch?v=2DkIC5-3_JA

Getting Stronger....!

Tay's immune system (and appetite) are continuing to build.  His eye focus and hand coordination are also on the rise.  He's falling back into a more normal sleep routine which mommy & daddy really appreciate!  He's only had 1 seizure in the past 16 days...yesterday :(

All in all, we feel Taylor is making incredible strides.  He's back fully engaged in his three 1 hour therapies a week.  My parents spent the last week with us in Atlanta, fully soaking up time with Taylor.  They are so good with him.  They have such sure, confident hands and really know how to comfort him (aka....SPOIL HIM!!!).  Lane and I took full advantage of the built-in babysitters!

A HUGE Thank You goes out to everyone that continues to follow this blog for Taylor.  He loves you all and can't wait to tell you himself one day soon.
:)

Again...I'll Let the Pictures & Videos Speak For Themselves

Taylor is really coming out of his shell.  I can't wait for you all to share in our joy of the new Tay:

You Will LOVE these videos:

CLICK HERE FOR VIDEO 1

CLICK HERE FOR VIDEO 2

Good News -- Better News -- and The Best News

The Good News - Taylor had his final check up at the KC hospital today...they said he looks great...the pneumonia and RSV are subsiding.

Better News - After being away from Atlanta for 37 days, Taylor and Mom are hopping on a flight tomorrow afternoon to come home.

The Best News - For the last 6 days, Taylor hasn't had any seizures!  He's a completely new kid.  It's almost like he's waking up to the world for the first time in over 6 months.  His eyes are focusing and tracking with such clarity.  He's smiling again and he's regaining his head control...much quicker than we had expected...especially after having laid in a hospital bed for so long!

For the most part, we're going to keep Tay at home the next few weeks...away from any more bugs while his immune system rebuilds.  As soon as he's ready, the new Taylor would like to see each of you in person and give you a big hug for all the prayers and well wishes you've sent his way.

Gone Baby Gone!!! Taylor is Leaving the Hospital Today!!!!!

We're being discharged as I write this, after 22 long days!  The way Taylor reacted when we put him in his favorite stroller to leave was incredible....I'll let the pictures speak for themselves...

Dad to return to Atlanta tomorrow or Monday....Mom & Tay to fly back later this week.
Love goes out to all that have supported us throughout this difficult ordeal.  We can't thank you enough.
Taylor can't wait to see you all in person, now that he's on the mend.

Strong Chance We're Outta Here Friday!

Rumor has it we may get discharged from the hospital on Friday if everything stays constant.  Taylor looks pretty solid right now:

Tay says he's ready to go home :)

Day 19 .....and Counting.... :)

Not much to report here. 
Pneumonia on the mend, seizures increasing a bit.  Neurologists are busy working on the solution now...they believe these new, more traditional seizures will be easier to treat.
9 inches of snow here in KC.  Dad couldn't get back to Atlanta today b/c there is still 6 inches of snow and 2 inches of ice there!  Will try again on Friday when things thaw.
We're all in good spirits here...can you tell from the short video?

Poppa "D", Laney & Tay



Sunday Smiles...

Tay had two more small seizures last night, but all in all...he's really starting to improve and perk up.  He's much more active now, rolling over and using his hands to pull his nasal cannula out constantly!  His little legs are all over the place, feet constantly searching for side-rails to explore.  He even snuck us a few smiles today.  The hospital won't allow us access to YouTube, but I snuck this 10second video out for you:

Dad plans to trek back to Atlanta on Tuesday, following the 7inch snow storm they're getting pummeled with right now.  Mom and Tay will fly home a few days after checking out of the hospital...hopefully Thurs or Fri this week!  :)
Anybody know what month it is???

Tay Keeps Us Guessing...

The Bad News:  In the last 20 hours Taylor has had 3 more of the new seizures.  These seizures are painful to watch, because they last between 20 seconds to 2 minutes and leave him completely drained of energy afterwards.  We videotaped one and sent to our docs in Memphis so we're coming up with a gameplan now to thwart them.  We have faith.

The Good News:  Tay's Pneumonia continues to improve.  He's becoming more active, jibber jabbering and grabbing things.  We almost had him smiling!  He's started eating solid foods again, although we'll leave in the feeding tube for a few days just in case.  Dick and Nina are both feeling better again.  They are getting to spend some quality time with Tay now.  Yesterday we had a spa day for Taylor.  We gave him a bath, trimmed his nails, gave him a haircut and a solid baby massage...all the while covering him with kisses.