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!!!

"STILL"

Drake Naylor's Episode


Drake Head Drops Scene 2
We are "still" in limbo with the seizure/ head-drop/ narcoleptic episodes. Since I "still" don't know what to call them, episodes "still" continue to be the word of the month (rather year). After going to Chapel Hill Children's Hospital for a 3rd opinion a month ago, we are "still" waiting. I was happy when I left there, Dr.T said he wanted to show the episode videos, records from Brenner's and details from the EMU (epilepsy monitoring unit) to his group of colleges. Sounds great in theory!!! I "still" haven't heard. E-mails have been sent and phone messages left to see where he is on an opinion. I'm "still" here watching Drake episode away!!!
There does seem to be a pattern starting to emerge. He'll have 4-7 days with no problems, then 4-7 days in a row of episodes. Last Friday one of the old type showed it's ugly face. He was passed out for 7 minutes and his oxygen dropped in the mid to low 80's. Oxygen was administered. He hasn't had one of those since early fall. The longest one lasting 4 hours (last year), but NOT typical. That word, typical, seems almost like an oxymoron :)

Surgery :(

The morning of the surgery was a normal check-in. I wasn't prepared for when the time came to hand over my child to a complete stranger. They don't allow parents in the room as they are putting their child to sleep for surgery. I didn't realize what it would feel like to say "I love you and will see you in a little while", when I actually was feeling as if, "what if he doesn't wake-up?"
Drake had two procedures one of course was the "feeding tube" (G-Tube) the other was called a Nissen Fundiplication. With in about 45 minutes of waiting, the anesthesiologist came out to inform us that Drake needed a fiberoptic intubation. Apparently his passageways are too narrow for a "regular" tube in his throat while being sedated.I'm not sure if this was a foreshadow of what was to come or just Drake being a little more interesting!!!
We were told,"You'll be in the hospital for a couple days for recovery." Drake had other plans! The first day, he couldn't swallow well. We were told, "This was typical", but once again it's hard to watch your child struggle to do a task as simple as breathing and swallowing. The nurses at the hospital were GREAT! We had a suction tube brought in to help keep his extra secretions from cutting off his airways. We held him all night worried he couldn't lie flat or even at an elevated angle. Worried, in case one of us fell asleep and didn't hear him "choke" or "stop breathing".
It doesn't take long to become exhausted in the hospital (not to mention they don't have Starbucks). I was trying to imagine what in the world Drake thought had happened to him. I was wondering if I had made the right decision to have this feeding tube put in. I was wondering if we were ever going to leave this hospital, period! I knew that we were not going to be heading out the following day since he apparently was even tolerating his feeds through his tube. And even if I wanted to give him a bottle, he couldn't swallow.
Several of my friends and family came by to try and give Shane and myself a break. On the second night Drake's teacher Mrs.L came by to check on our little guy. Once again it was another moment of God's intervention; when the 3 of us were looking over the crib, talking about the days events when all of a sudden...
Drake started turning purple, arching his back and seizing!!! Mrs. L, calm as could be, said he's having a seizure, go get a nurse. I remember looking back at her as she was turning Drake over and all I could do was run out the door and yell for help. In all my years of emergency training, it all goes out the window when it was my child lying there. Shane came running shortly after me yelling for the nurse to come too. I'm not quite sure how long of a time period took place. I do remember thinking this was the end for Drake.
They decided some sort of mucus plug got lodged in his throat. The doctor on call came an hour later or something like that. I was not a big fan of that young man for the rest of our stay at the hospital! Even if this was something he had seen everyday, we were in need of a little compassion. I also felt like it was a little early in his career to be so non-chalant about our son's well being. In other words it seemed like "no biggie" to him.
Once again, the nurses are the ones who made the difference. Drake did come out of the seizure, but still was having trouble breathing and swallowing. The nurses came on a regular basis in and out of the room. His oxygen levels were continually in the 80's. After 3 nights of holding Drake and persistence of the nursing staff they decided to put Drake in the P.I.C.U. (pediatric intensive care unit). He was there for only two days then released back to the recovery floor. My mom was nice enough to get us a hotel room at the hotel next door so we could get a few hours sleep. They wouldn't allow us to stay in the PICU with Drake and we were both physically and emotionally tired.
After 7 days at Brenner's we were going home. I think I left there crying after they showed a video on CPR, "just in case". I didn't want to stay in that hospital room anymore, but I also didn't want to face being at home alone. Needless to say, I was never alone! Between Shane, my mom, my mother-in-law and Mrs. L, we all survived the recovery at home. My mom brought in groceries then my friends and friends from M.O.P.S.(mother of pre-schoolers) brought dinners for a month!!! And yes, food in VERY comforting at a time when you don't want to think about what to fix next. Everyone even brought a little dessert for Grant, the BIG brother :)

My latest video for the 4th Annual DNI !!!

4th Annual Drake Naylor Invitation