Owen's scary episode

Yesterday, Owen woke up with a fever and ran one all day long. It ranged from 99 to 103 and we could tell that he did not feel well. It wasn't like he was extremely sick...he drank juice, milk and water...ate some scrambled eggs...he just seemed like he wanted to lounge around for most of the day.

About 5:00PM, I was in the kitchen, Jen was in the den and Owen headed into Nate's room to watch SpongeBob. Shortly thereafter, Jen heard a sound that just didn't seem quite right so she went to check on him. When she walked into the room, she found him on the floor by his chair having convulsions. She screamed for me to call 911 then picked him up and carried him out to the den.

Our immediate thought was that he was choking. I tried to get my finger into his mouth to clear out anything that might be in there but his teeth/jaw was clenched shut. He was breathing loudly so I put my ear to his chest and heard his heartbeat. I then realized that he was having some sort of seizure.

Jen was on the phone with 911 and we could hear the sirens from the Bixby Fire department heading our way. I just kept talking to him and checking to make sure he was still breathing and had a heartbeat. I had Jen get a couple of ice packs out of the freezer and I put them on his face, torso and arms to try to stimulate him.

A few minutes later, the Fire department arrived and got O2 going on him. The Captain and the EMT helped me with him and he started to come around slightly. The O2 mask on his face irritated him and he started to fuss, which was a good sign. EMSA arrived about 4 or 5 minutes later and began checking him out as well. Once he was stabilized, we took him to the ER at St. Francis. On the ride over, he pretty much just stared out the window and looked around at the inside of the ambulance.

The paramedic said that it sounded like a febrile seizure, which is a fever induced seizure. Jen notified the pediatric cardiologist on call for Dr. Lundt and he told her the same thing. Once we got to the ER, he slowly returned to his normal self...he wanted to be held by either me or Jen and he wanted to go home NOW. All of the tests (blood work & EKG) were normal so the conclusion was that he did, in fact, have a febrile seizure. The theory is that his fever spiked (his last dose of ibuprofen was at 12:30PM and he was just about due for a dose of Children's Tylenol) and this is how is body reacted. The ER doc gave him an IV antibiotic in case he does have an infection that is causing his white blood cell count to be up. If it's viral, there is nothing that we can do except to try to keep his fever down with Ibuprofen & Tylenol as it runs it's course.

Owen slept pretty good last night even though we had to wake him at 3AM for his dose of Ibuprofen. Today he has been doing pretty good...he is still running a low grade fever and doesn't really want to eat much. He does want to play and has been alternating between me and Jen as his "playmates"!

Needless to say, the whole episode scared the hell out of me & Jen. Our biggest fear is that something will happen to Owen and that was the first thing that popped into our minds. With Nate, we always knew what to do and how to do it when an emergency situation arose. This time, it was scary because we didn't know what to do right at the first. There is a 10% chance that he could have another febrile seizure but they are NOT life threatening and do NOT cause brain damage. They usually last about 15 minutes and that was pretty much the timeframe of his episode. Going forward, we'll have to keep his fevers under control and we hope & pray that we never see him like that again!

Please keep Owen in your prayers and we'll keep you updated on how he's doing...

Thanks,
Trey

Halloween Night

He loves these girls, Sophia and Olivia!

Eating pizza with Olivia, Sophia and Carter

Ready to Go!

He knew just what to do to get his treat! And he even said thank you - most of the time :)

Halloween Parties

At our neighborhood Halloween party waiting for the hayride to start with another spiderman.

Shannon's Halloween party.

More Pumpkin Patch

This was a very cool corn maze that had scarecrows along the way.

Owen rode Shadow the pony for a long time all by himself! Last year he was clinging to my dad for dear life as he rode the horse. Wow, how he has changed in one year! Brave boy riding horses and camels! :)

A real pumpkin patch at the end of the corn maze.

Pumpkin Patch

Owen loved the camel rides! He wasn't afraid one bit!

Owen's Halloween Class Party Pic

Owen's Halloween Festivities

What a long, busy, fun weekend it was! Thursday Owen had a costume parade at school and then a party in his classroom. I was able to stay and enjoy that with him. Friday morning we went to the pumpkin patch and we all had a great time! Saturday our neighborhood had a costume block party, which was a lot of fun, with food, games, hayrides, and dancing. Sunday (actual Halloween!), we had another party to go to hosted by our friend, Shannon (she helped with putting together Nate's Up With Trees). Lots of kids and fun at this party as well! Halloween evening we went over to our neighbors (The Nalleys) for pizza before trick or treating. Owen loves those kids! And then finally trick or treating! Owen did great, much more into this year. He tired out pretty quickly but had a lot of fun! We missed our Nate. Halloween was different without him, but almost everything is different now that Nate is not with us. But at least Owen keeps us going and keeps us smiling and having fun! Nate is probably loving watching his brother enjoy life! :)

Enjoy all the pics! Jennifer

Nate Paying it Forward

We have donated a lot of Nate's equipment and supplies to different charities. But some of the equipment we really wanted to know where it was going to help someone like Nate. Our friends, The Gundy's (who have a son, Kyle, with SMA Type 1 as well), have a local charity that donates equipment to needy families with SMA or conditions similar to SMA. We gave them the Vest and Cough Assist, along with a few other items. The vest and cough assist were very crucial in Nate's care and are wonderful medical devices. Both of those have been given to families that needed them. I received a note from a mom, Jennifer, whose son Zeke, has Cystic Fibrosis. They were the ones who got the vest. It has already helped Zeke so much since they have had it and has helped make his life easier. That makes us so happy! :)

Above is a picture of Kyle Gundy enjoying Nate's old swing! He's almost too big for it, but at least he will get to enjoy it for a short time. Then I'm sure they will pass it on to another family whose child would love it as well. This would all make Nate very happy to know others are benefitting from his old equipment and enjoying his swing!!! :)

Yesterday Owen and I went to a birthday celebration for Kyle at Chuck E Cheese. He turned 6 years old! Yeah Kyle! It was good to see them and be able to enjoy Kyle's special day with him. The only hard part was when we pulled up and Owen saw Kyle in his wheelchair Owen yelled "Nate!". I said no, that's Kyle, but he's a lot like Nate. Then he seemed fine and had a great time. Happy birthday sweet Kyle!

Nate's First and Second Halloween

2003 - Nate the lion

2004 - Nate the frog (too many cute pics this year to just post one!)

Nate's Halloweens

2006 Nathan Russell, M.D. (SMA Specialist)

2007 - Nathan Russell, Police Officer

2008 - Nate the Sailor

2009 - Nate the Jailbird

Nate loved Halloween. It's going to be a tough weekend without him. Since moving to our new house when Nate was 2, we would always sit outside or in the garage with Nate and hand out candy. He loved seeing all the kids and all the kids loved seeing Nate in costume. It's going to be a lonely, different holiday this year. Here are my favorite pics of Nate from each year except 2005 when he didn't get dressed up. I believe he wasn't doing well at that time and we weren't able to celebrate. Enjoy our handsome boy in costume! Love and miss you buddy! Hugs and kisses! Mom, Dad and Owen

Charlee Bisch & SMA Awareness

Charlee Bisch is the daughter of Steve & Meri Lyn Bisch, who live in St. Louis. Steve and I were roommates and Delta Kappa Epsilon fraternity brothers at Vanderbilt and we have remained good friends over the last 20-plus years.

At the end of August, Meri Lyn sent us an e-mail about Charlee participating in the 2011 Miss Missouri Outstanding Teen program. One of the components of the competition requires that the contestants have a platform to promote. Meri Lyn offered several suggestions but Charlee told her that it had to be something special to her and told her that she had selected "SMA Awareness" as her platform. Meri Lyn then shared one of the papers that Charlee had to submit to compete in the preliminary competition:

AWARENESS OF SPINAL MUSCULAR ATROPHY (SMA)

In 2003 my Dad's college fraternity brother was expecting his first child. Nate Russell was born a beautiful and perfectly healthy baby boy. At five months old they noticed delays in his motor stills. They had him examined and tested by several physicians. The result's they received from the testing were something they never imagined. Nate was diagnosed with type 1 SMA. SMA stands for Spinal Muscular Atrophy and is a disease which affects the motor neurons of the spinal cord and the brain stem. Sadly, type 1 is the worst of the three types and most often fatal. Doctors told Nate's parents that he would never live past his first birthday. His first birthday passed, then his second, then third, fourth, fifth, and sixth. Nate wasn't able to celebrate his seventh birthday. Fighting as hard as he could on April 28, 2010, Nate earned his Angel Wings.

I have always loved children and I remember meeting Nate for the first time. In 2006 my family moved from California to St. Louis and while driving our motor home to St. Louis we stopped in Tulsa, Oklahoma to visit with Nate's family. We saw many pictures since Nate was born and followed his blog but had never met him in person. My family entered his room where he was sleeping and immediately I heard the noise from the machines that monitored him. I thought, WOW this is some kid!

My second encounter with Nate was in 2008. It was a wonderful weekend. Four of my Dad's fraternity brother's families met in Tulsa to celebrate Easter with Nate's family. One of the major affects of SMA is that Nate was not able to talk. Instead, he used his gorgeous big blue eyes to talk and sometimes he made a faint sound in his throat. Nate was completely mesmerized as I would read books to him. Nate also loved watching SpongeBob and the younger kids would often watch with him. We all dyed eggs for Easter. We brought the eggs to his room because he wasn't well enough to join us.

The Miss Missouri Outstanding Teen Program will offer me numerous opportunities to promote my platform, "The Awareness of Spinal Muscular Atrophy". I would like to start a 5k walk promoting SMA awareness targeting all age groups. At the walk I plan to have several booths to help educate everyone on the facts of SMA and show everyone that raising awareness can be fun and educational.

Seeing Nate sleeping peacefully assured me that God blessed him with six and one half crazy amazing years of life. It showed me that he was here to make a difference in people's lives and this is why I am now sharing Nate's story. Nate's life made me realize that more people need to understand this disease and know that the children with SMA are no different than us but just packaged a little differently.

I am very happy to report that on Saturday, October 16th, Charlee was named Miss Gateway St. Louis Outstanding Teen 2011 and will be moving on in the competition to become the 2011 Miss Missouri Outstanding Teen. Here is a picture of her winning the crown:

Jen and I are honored that she would select SMA awareness as her platform and will do all that we can to help her educate people.

Charlee, THANK YOU so much for selecting SMA Awareness as your platform and helping us keep Nate's memory alive!!!!

Trey, Jen, Owen & Angel Nate

Up With Trees (Nate's Tree)

Today we went to Hunter Park for the planting of Nate's tree, thanks to Up with Trees, and donations made by my dear friends to make this possible. It was perfect! Beautiful weather, beautiful park, beautiful spot. This park is special because we used to take Nate here to feed the ducks and walk around. We still take Owen there a lot and I run there on occasion right by all the trees. The spot they picked for Nate's tree is right by the path, and right by the pond. We loved it! I had a very hard time this morning. Tears were flowing. I never have any idea how things are going to affect me. Knowing this week that the planting was coming up, I never thought I would get so emotional. It's still so hard, I go days without crying and seeming "okay", and then I will cry and cry and cry! Oh how we miss our Nate. This tree is just another wonderful gift given to us to remember him and we appreciate it so very much! Jennifer

Up With Trees - Nathan's Tree

SMA Race n Roll Kansas City

Trey and I went up to KC a couple of weeks ago to run in the 10th Annual SMA Race n Roll to benefit SMA research. It was a great day. Very emotional, especially when I met the Sykoras for the first time (son Charlie is Nate's age with SMA Type 1 also and reminds me so much of him!). I kinda lost it then and also during the speech before the race. It's so nice to meet people who you have so much in common with, but emotionally Trey and I are still very raw and it's hard to keep it together. I wore a pic of Nate on my search to honor him. My brother ran the race with us also. My sis-in-law, Aunt "B", watched and cheered us on. It was a good turnout and we will definitely make this an annual event! Next year, maybe we'll be a little more healed and will be able to meet more families and stay a little bit longer. It was a fun weekend in KC with lots of festivities with two of our favorite people, Jeff and B! Thanks for having us!

More Owen's 3rd B-day pics (a couple months late!) And a Youtube Video

These were at Incredible Pizza riding go karts! He loved it and we let Uncle Jeff and Owen win and receive the 1st place ribbon! Then he got to eat filet for one of his many b-day dinners. Not a big fan of steak quite yet, but he loved the ice cream cake. Youtube video of that is http://www.youtube.com/watch?v=YsJIwrNg54w .

Owen at Cousin Daisy's Baptism (Youtube Video)

Too Cute! Owen is listening intently to priest and "reading" the Bible during the baptism. He keeps saying "God is Great, Amen", which is part of his blessing we recite before we eat. What a sweetie!

http://www.youtube.com/watch?v=D3SnZ6ssHOg

Signs from Nate

For the last couple of weeks, I have really been missing Nate. Today, he decided to help me out a little by giving me three separate signs...

One of the ways I have dealt with the grief of his death is by running. Back in June, I tore the meniscus in my right knee so, after a cortisone shot, I have gone to a combination of biking and running. This morning during my bike phase, I was riding up a hill in the older neighborhood north of Twin Creeks III. Both Jen & I view hills the same way, we ride and run them with a vengance "for Nate" because, while they are the toughest parts of a ride or a run, they pale in comparison to his battle against SMA and what he went through every day of his life.

I was thinking about him as I went up this hill and about 3/4 of the way up, a butterfly suddenly landed on my left hand and, just as quickly, it flew off. It was almost like a quick kiss, it was so brief. I knew it was him and it was something that I really needed.

After biking, I went for my run and decided to run up the same hill. While it would have made a great story for me to see another butterfly on that same hill, it did not happen. As I was heading back home, I decided to run down the street behind us then come up our street to end my run. Normally, I just make a left turn and run to our house but Nate had another sign to give me. As I was coming up our street, which is a hill, three small butterflies (flying in a straight line together) literally bounced off my left leg then flew off in front of me. I couldn't help but smile...

Now here's the topper...After my cool-down, I started walking up our driveway when I glanced to my left. There in the middle of our driveway, was another butterfly just sitting on the ground. I stopped and decided to walk towards it. As I got close, it flew off about three feet then landed. I walked closer and it did the same thing again. Every time I got close to it, it moved away but did not fly off...it moved just out of reach. The symbolism of this is not lost on me...while I would give anything to kiss, touch or hold Nate, even for the briefest time, I know that he is always around me but will always be just out of reach...

Thanks for the signs, Nate, Dad really needed them today! I love you and miss you SO MUCH!!!

Trey

Nate gained a new friend in Heaven

On Sunday morning, Nate gained a new friend in Heaven. Mike Lisk, a good friend and coworker for almost 20 years, passed away after suffering what appears to have been a massive heart attack. Mikey was a larger than life character who never met a stranger. He and I worked, traveled and shared many a Guinness beer together. In fact, one of my best "small world stories" involved Mikey and the Black Rose Irish bar in Boston.

One of the things I will treasure most about Mikey is his care and concern for Nate. One of his sons was born prematurely and required a very high level of care after his birth. Mikey was one of the few friends who could truly relate to the challenges and struggles that go with being the parent of a fragile child. He always asked how Nate was doing and would do anything for him or us, if we needed it. And that is how he was for everyone.

Mikey will be buried on Friday with full military honors as he faithfully served our country for 20 years as a USAF Combat Controller. Like so many others, I will miss all of the "Mikey Stories" but I do know a few things for certain...

When Mikey got to Heaven, he found Nate and gave him two big hugs...one from me and one from Jen...then he sat him down and started telling him stories. And if I know Mikey, he still won't be done when Jen and I finally join them!

Trey

Owen's words of wisdom

On Monday evening we were swimming with Owen and talking about his birthday, Nate and all the things that we had done that day. We told Owen that Nate is wishing him a big happy birthday from Heaven in the sky. We said "Hi, Nate...We Love You!". Then Owen said "Nate's on vacation". So true...Heaven is the BEST vacation ever!

Trey

Happy Birthday, Owen

HAPPY 3rd BIRTHDAY, OWEN!!!

We love you,

Mom, Dad & Angel Nate