they'rRRRRRe baAAAAAAck!!!

Thursday a week ago I got the phone call, "Trish, he's been out for 15 minutes...what do you want us to do?".
I was heading to his school at the time and when I got there he was still "asleep". One type of his episodes were back, but this kind is different from the usual pass in/out with a cluster effect.

Let me review since last fall:
1. He was having this type of episode more often.
2. He passes out and doesn't come to for quite a while. The usual amount of time being from 20 minutes to an hour. The longest being 4 hours.
3. The 4 hour episode was a year ago to date (weird)! Yes, we were at the ER by then and had been transported from Cone to Brenner's. And no they couldn't determine ANYTHING!!!
4. We were put in the EMU to determine if he was having seizures. They said yes and put him on a medication which didn't work.
5. Then tried another that made him very sick.
6. After several months of trying to get the doctor to communicate we switched doctors.
7. The 2nd opinion doc was not convinced he was having seizures.
8. We decided to take him off that particular medication.
9. Drake's been only having "cluster" episodes since he was on that particular med, even if it did make him sick.
10. I don't have a #10, just seemed I needed to add it. Maybe I should have called it Drake's Top 10 Reason's to keep Mommy on here toes for the past 6 months!!!

Back to now:
He's been off the Kepra for 10 weeks now.... and what do you know? He's had two with-in one week. Last Thursday lasted an 1 1/2 hours, this Monday lasted 25 minutes. He seems asleep, but jerks periodically during these episodes. Monday was the first time I looked at his eyes during this type episode and they looked like little pin points. What does that mean? (Note to self: research that later.)
Both times this week I called Drake's pediatrician and he had me come right away. Wouldn't you know...he woke up just before the doctor had a chance to see him. UGH!!! It's a good thing I had witnesses to see Drake pass out or I would begin to think I'm a little crazy!

The current Neurologist (2nd opinion) has advised me to give Drake a dose of Diastat if it goes for longer than 5 minutes. I still have not heard from the Chapel Hill Neurologist (3rd opinion) as to what he thinks.
Once again...we wait!

The 4th Annual DNI...HUGE success!!!

Dear family, friends and fellow shooters,

We felt this year, for the 4th Annual DNI, was our most successful event yet! We had more volunteers than ever before, more silent auction items donated by local businesses and from parents in the program, more excitement about Taylor Swift raffle tickets, more support by those which had never attended and a gracious $50,000 raised!!!
This event has continued to show us that our community has embraced not just Drake, but these children at the Greensboro Cerebral Palsy Infant/Toddler program & The Gateway Education Center. It has shown us that together we can and do make a difference. We also have been shown that even if Drake can not speak to us in words…he still speaks volumes to our community!!!

Thanks once again for your support,
Shane, Trish, Grant & Drake Naylor


A special thanks to: Our many volunteers, Shane’s Sporting Clays, Remington Arms Co., Greensboro Coliseum, White Flyer Targets, Carolina Promotions, The Pratt Family Foundation, Sagebrush Steak House, Tom & Carole Naylor, Marian Parker, Jack Lamb, Sr., Jack Lamb, Jr., Steve Pucket, Greensboro CP & Gateway Education Ctr., and of course Drake Naylor…for with out you we would not be doing this event!!!

For more information goto:
www.drakenaylorinvitational.org

Thanks and Good Bye!!!

As much as I loved My Mother's day, it was sort of a sad day for me, Drake and our family. One our favorite nurses for D- had to go back home to Wilmington. Yes, it's true what they say, it's always the good ones that get away. I wouldn't wish her anything but the best though!!! (and I don't blame her for wanting to be back in such a beautiful town!)
There was a little something different about L-... she had a brother with special needs, He passed away 5 years ago. She not only understood Drake, but what my other son Grant had to endure everyday as a sibling of a special needs child. It was hard for me to believe in our interview when she talked about how much alike Drake and her brother were, from their disabilities, to their abilities. It showed in every way, in how she interacted with him though. She took to Drake as if it was her own brother and not just another patient who needed her assistance. She seemed to take it all so natural, which shouldn't have surprised me. I often wondered what she must be thinking since her brother was older and L- never had the opportunity to know him as a 3 year old child.
I even had the chance to meet her mom... it felt like I had known her my whole life. We were able to share a cup of coffee and our journeys of our boys. She has been through what I fear every morning when I walk in Drake's room. She also showed me that this time is a gift and to use it to it's fullest.
In some sort of way I feel our families will always be connected. L- even wrote a note, "...It is so crazy how much our families are alike. After my brother passed away, I felt like I lost a huge part of my life, but after working with Drake and your family I feel like I have gotten part of that back...." It's truly amazing the lives Drake has and will continue to touch.
Thanks Dan for sharing your sister and your family too!!!

Mommy and D-

This is from a month ago at Easter. I'm just now getting around to viewing them. My VERY talented cousin took this picture. It's always a nice treat to get a picture of Mommy and Drake. I can't get enough of that smile!!!