Merry Christmas

Nate,

MERRY CHRISTMAS! We hope you have a great day in Heaven....WE LOVE YOU & MISS YOU!!

To all of our family & friends,

We wish you a MERRY CHRISTMAS!

Trey, Jen & Owen

Owen's cardiologist appointment

Owen's appointment on Friday went well. The results from his halter monitor were good and Dr. Lundt was very pleased with him. It took a little bit of time to get his EKG done at the start of the appointment since he would not stay still....surprise, surprise! We'll keep his medication the same and he does not have to go back until next December.

I consider that an early Christmas present for Mom & Dad!

Thanks for checking in on us...

Trey

Owen & his heart monitor

Here is Wednesday's post from Jen's Facebook page on Owen:

Every six months Owen has to wear this heart monitor & halter for 24 hours to see how his heart defect (SVT) is doing. I was worried he wouldn't leave it on but he has been great!!! No problems! What a good boy! He's even playing with the monitor part of it saying it's his "Secret Box" (from a SpongeBob Squarepants episode) !!!! :)

Owen & the Cleaning Ladies

This morning, Nancy took care of Owen while I was having my knee surgery (all went well and it actually feels pretty good right now). Every other Friday morning the maids come and today was one of those mornings.

Owen really likes these ladies and he is always trying to help them clean. Several of the ladies that come have done so for several years and are quite attached to Nate & Owen. I'll never forget the total shock and sadness on Betty's face that Friday morning when we had to tell her that Nate had just passed away.

The best plan with Owen on "Cleaning Fridays" is to get him out of the house! One thing Owen loves to do is play in Mimi's car so that is where they were this morning when the maids arrived. One of them happened to be Betty so she walked up to Nancy's car to say HELLO to Owen and here was Owen's response...

"I am going over to Mimi's house. You can go inside and clean. We'll be back later."

Not exactly what she expected to hear but priceless...

Trey

Owen misses Nate

This evening as we were winding down the day and getting Owen ready for bed, I told him that Mimi was going to be here when he wakes up in the morning. I told him that Dad is going to the doctor's office tomorrow and Mimi will take care of him until Mommy & Dad get back.

In reality, I am having arthroscopic surgery on my right knee to repair a torn meniscus so I can get back to running.

He and I talked about tomorrow morning because, for a long while after Nate passed away, Owen always asked when someone would be back as they left. Both Jen and I attributed this to the fact that he realized that Nate left and never came back.

About 5 minutes after I told him "night"and closed his bedroom door, I heard him kinda whimpering and talking softly. I went back into his room and asked him what was wrong. The answer was not what I expected...

He told me that he was missing Nate and that he was sad & crying. I was stunned...I told him that we all miss Nate and that he is doing great in Heaven.

He then asked if Mommy was driving me to the doctor's office, who is driving Mimi to our house and a couple of other questions. I told him that everything will be OK and not to worry that I just have to go see the doctor. He wanted several hugs & kisses and I was very happy to give them to him!

Owen is a true blessing just like Nate! Sometimes I wonder what he remembers and understands then something like this happens to put it all in perspective...

Thanks for checking in on us!

Trey

This is SMA

The Gwendolyn Strong Foundation created this moving video about SMA. Jen & Nate are in it...the photo is one of our most cherished memories as it was taken shortly after Nate was born and it was the FIRST time that Jen held him.

Link to This is SMA: http://www.youtube.com/watch?v=m2sqOEkjnOg

Thanks,
Trey

Owen's doctor's appointment

Well...Owen's right ear and throat are infected. We don't know if he has strep throat or something else but it's definitely one of the causes for his fever. His white blood count was almost 23,000 (double the normal amount) and his throat looked horrible so Dr. Cyrus started him on an oral antibiotic. Since he got home, he's eaten 3 Popsicles and the ibuprofen has kicked in. Hopefully, he have a good nap!

Thanks for the thoughts & prayers and we'll update everyone tomorrow...

Trey

Guess I spoke to soon...

Shortly after my last post, Jen called to tell me that Owen is back to running a fever. His nap was only about an hour & a half long and he just wants to lay around. He is definitely trying to fight off something and we have moved his doctor's appointment to Tuesday morning.

Owen's Monday Update

Owen woke up with NO fever this morning! His night was OK but it was a somewhat restless night of sleep for him. I could tell that he was dreaming a good bit because he talked and mumbled a lot during the night. If fact, about 3:20AM this morning, I heard him singing "Old MacDonald Had A Farm" and I am not joking! He sang the whole main part including EIEIO...

I had given him a dose of medicine at 3:00AM and I thought that he was still awake from that. When I got into his room, I realized that he was sound asleep but singing in his sleep instead of talking!!! It provided a much needed laugh even though it was the middle of the night...

Thanks,

Trey

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