Nate the Jailbird

You can't see his ball and chain in the pictures very well.

He looks mean doesn't he! Perfect jailbird look !

Owen the Firefighter!

The Boys Carving Pumpkins

Nate hand painting a pumpkin with his teacher

More Pumpkin Patch Pics

Pumpkin Patch Pics

We had such a great time today!!! It was beautiful weather, except it was VERY windy. The boys saw all kinds of animals. Owen rode a horse for the first time today. He didn't seem too interested in riding the camel - a little afraid of it (maybe next year!). They saw a lot of goats, sheep, pigs, turkeys, horses, a huge turtle, and much more. And of course, they saw tons of pumpkins and scarecrows! Too much fun!

Off to the Pumpkin Patch today...

Looks like nice weather today, so we're headed out to the pumpkin patch with the boys. Nate has already told me how he wants to decorate his pumpkin! Should be fun! I'll post pics later.

Nate got the 1st shot of the swine flu vaccination. I was very nervous about side effects, but more scared about him getting the flu! He had no reaction and so far, so good. He gets the second shot in about three weeks.

He is doing GREAT in his power chair. The new device is perfect for him and he is so happy when he's driving! Smiles from ear to ear the whole time. He has so much more control and accuracy it's amazing. Wish we had done this a long time ago! But better late than never.

Owen is such a big boy and a great brother to Nate! He helps so much and he's only 2! He knows Nate's routine and what comes next. He knows what buttons to push to start machines and turn alarms off - it's amazing! And he is so loving with him. Nate really enjoys his company. WE ARE SO BLESSED!

Our main day nurse, Jennifer, is on maternity leave and we miss her so much! Nate LOVES her, really, he has a huge crush on her. It's so cute. So, we've had some shortages in nursing and it's been a little challenging. We are so thankful for Jennie, our night nurse. At least we can get some sleep!
Thanks for checking in!
Jennifer

Melts my heart....

Nate Driving His Power Chair -YOUTUBE

Nathan got a new set up for driving his power chair. It's a scanning device with a red light that rotates for forward, right, left and backwards. He has a micro light switch with his knee for the direction he wants to go. He's only practiced this for three days and is doing very well! He was using a mini joystick with his finger, but didn't have the strength or enough movement in his finger to drive with complete accuracy. I think this device suits him better. But he'll need lots of practice! He LOVES driving. Gives him independence and mobility. His favorite thing is going in circles - imagine that for a 6 year old boy!

http://www.youtube.com/watch?v=J0zVrfg0bTE&feature=channel

YouTube Video of the Boys on the Zoo Train

http://www.youtube.com/watch?v=2ra3Z7ROFZE

A few more zoo pics

The Boys at the Zoo

Jennifer (Nate's nurse), Grandpa, Grandma Judy, Nate, Owen and I all made a trip to the zoo this week. It was a BEAUTIFUL day! It was Owen's first time there and he loved every minute of it. Never got bored or fussy - and we were there a long time! Nate also had a great time! We rode the train! I didn't realize it, but the train has a ramp and a place for wheelchairs (even one as big as Nate's!). We were so excited that we ALL got to ride the train! The children's petting zoo was also a big hit! The animals were very interested in Nate's wheelchair and some goats "kissed" his feet. Owen petted all the sheep and goats - wasn't scared a bit!

On another note, we took Nate for a general check up at the dr. last week. He got a great report and the dr. thinks he is doing extremely well! We will be going to St. Francis Children's Hospital next week to the respiratory therapy department to have his bi-pap machine settings checked, which needs to be done. The dr. didn't change much as far as feedings, medication, really anything. He said he's doing so well and "if it ain't broke, don't fix it!". Gotta love that.

Enjoy the zoo pics!

Thanks for checking in.

Jennifer

YouTube - Nate blowing bubbles with his teacher

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

Youtube Video of Nate using his eye gaze communication system

I've tried and tried to get Nate REALLY using the eye gaze like he normally does, but to no avail. This is the best I could do. He usually really "talks" and during school is great - answers questions and communicates with the teacher and therapist. I love it! He has a very funny sense of humor and is so smart!

http://www.youtube.com/watch?v=OlFSMkkf2oA

Youtube Video of Owen and the water hose

http://www.youtube.com/watch?v=UrOAGG6oXI8

More pics at the park

Pics of the Boys at the Park

Pop and Grandma Annie visited this weekend. We had a great time. We took the boys to Hunter Park. They fed the ducks and there was a live band there that they thought was fascinating! It was a beautiful day. Later in the evening we took them to our neighborhood park also. It was so nice, we wanted to spend a lot of time outside. It's been raining here nonstop forever, so it was good to get out!

Update

Nate is doing really well! Our summer ended kind of short as far as warm weather and pool time, but we've been able to enjoy going to the park and long walks, which Nate loves. Soon we'll make a trip to the zoo and pumpkin patch (can't believe it's that time already!). He's been busy with school. His teachers this year are wonderful! He's using his eye gaze during school and answering a lot of questions and communicating with the teacher and therapist. He's doing great! So smart!

Nate lost one of his front teeth - finally! They have both been hanging on for a long time. He was so brave and didn't cry a bit. We ended up having to pull it because it got caught on a cloth and was bleeding. Tooth fairy rewarded him for being a big boy!

The boys have been having fun together. Owen is so good with Nathan. They are interacting a lot more as Owen gets older. Nate laughs a lot at Owen and enjoys his company.

Owen is "talking" a lot more these days. He is delayed and has been in speech therapy. We had his hearing tested and it was perfect. So it seems there's nothing medically wrong, he just is taking his time.

On another note not related to the boys, my Aunt Sue (mom's sister) passed away a couple of weeks ago. She had been battling ovarian cancer for a long time. My heart is so sad, but also relieved she is no longer suffering from this horrible disease. She was so good to us and to Nathan and loved seeing the pictures and the updates. I'm sorry she never got to meet them in person, but am thankful for this blog and her ability to get to know them through technology. I love you Aunt Sue - RIP!

Jennifer

Youtube video of Owen giving Nate a kiss - so sweet!

http://www.youtube.com/watch?v=tblt3M2_n10

DEFCON 1

One of the hardest things to do as a parent of an SMA Type 1 child is to adequately convey the heightened level of awareness and anxiety that we live with on a daily basis as we care for Nate. One of the blogs that I follow is www.gwendolynstrong.com, in which Bill & Victoria Strong chronicle their daughter's battle against SMA Type 1. They are an amazing family and have done a great deal to raise awareness and research funds for the fight against SMA. (The link to Gwendolyn's site is on our blog's homepage.)

In a recent post on their website, they eloquently address this issue and I'd like to share it with you:

Concerned About Gwendolyn
We're pretty concerned about Gwendolyn. She has had several very, very scary choking episodes over the last few weeks while off bi-pap, is really struggling coming off bi-pap at all at this point, has had a few episodes of turning gray and dusky even while on bi-pap, has been lethargic, fussy, and just plain isn't herself right now. In general, all of her stats -- heart rate, oxygen saturation, and temperature -- have been normal save for this morning when her oxygen saturation crashed into the 70%'s on our last set of Cough Assist during her morning breathing treatment. But she rebounded relatively quickly with oral suctioning and another quick cough set. And, to top it off, I got a serious yellowish mucus plug while suctioning her orally after our walk this morning -- I think she was working on bringing that up the whole morning which is probably what caused the issue during her morning treatment.

Every second of every day we operate on a ridiculously high level of anxiety, alertness, awareness, and readiness -- even when Gwendolyn is perfectly healthy. We have to, as she can literally plug and stop breathing, as she has several times over the last few weeks and countless times over the last two years, at any second with zero warning, no signs, and no way to tell us (we literally have to be watching her 24/7). And when we see even the slightest signs of change in anything, and I mean absolutely anything, it sends us into a new stress galaxy altogether.

For me, besides the obvious, this is one of the most exhausting parts of parenting a child with SMA Type I. I kind of feel like I'm in a constant state of DEFCON 1: I know the inevitability and the statistics of the disease, I've had to watch Gwendolyn valiantly fight for her life on too many occasions already, I know that we are on borrowed time, I know pretty much all of the scenarios of how this will likely unfold, but...and this is a HUGE BUT...I don't know when. It could be right this second, it could be tonight, it could be tomorrow, it could be next month, it could be next year, it could be five years from now. Regardless, we have to live our lives on a second to second basis knowing that we are going to lose our daughter to SMA and it could be at any one of those preciously short seconds. And that's pure torture for me. Plain and simple.

Well said, Bill & Victoria, well said....

Trey

I know...

it's been a long time since I posted. Everything is fine, just busy (what's new right?). Anyways, a "good" longer post/update will be coming soon. Hopefully, with new pics and videos. I'm trying to get a video of Nate yelling his happy sounds and also him using his eye gaze communication device, but of course, the minute I turn on the video I get nothing! He won't cooperate - UGH! But I'm trying and I'll have some new pics as well.

Owen's B-day Pics

Owen B-Day Pics

His new pony from Gammy!

Owen's 2nd Birthday!

Owen turned TWO YEARS OLD yesterday! It has been a blessed two years watching Owen grow and develop! We had a great weekend with Nana and Grandpa Wayne visiting from Dallas. Nate also enjoyed celebrating his brother's b-day. I will post pics very soon.

Nate has been doing well. Busy times with school, therapy, and also FUN stuff. His new favorite outing is Walmart, so I've been trying to take the boys once a week on a shopping run. Nate loves it! Owen - not so much. He gets bored and tired of being in the cart half way through my shopping. I try and HURRY! Then ususally he gets to ride the pony after we check out and that makes him happy!

We've had a great summer and everyone has stayed healthy. Hopefully, we still have another month of pool time for the boys since they love it so much.

Thanks for checking in!

Jennifer

6th Birthday Pics

Nate's 6th Birthday

Nate has had a good birthday weekend! On Saturday, Gammy, Uncle Jeff, Aunt Bradette, Grandpa Jody, Grandma Judy, Great Aunt Jill and Great Uncle Hal came over for pizza & cake. Nate had a rough time at first...he didn't do well in his chair and his stats were low while his heart rate was up. We got him back in bed for a little while then brought him back out on his bean bag and this went much better.

Sunday was an easy day around the house with no plans but today we went to the Oklahoma Aquarium. This is an annual excursion on his birthday and he seemed to enjoy it for a little while. As long as we were moving, everything was great. If we stopped to look at things, well, everything wasn't so great. He fussed most of the way home and once he got squared away back in his room, all was right with the world! Mommy hung new Super Hero stickers on the ceiling and dad hung a solar system mobile...pictures to be posted later.

Here are pics from the festivities....

Birthdays Past

Nate's 1st Birthday


Nate's 2nd Birthday
Nate's 3rd BirthdayNate's 4th Birthday

Nate's 5th Birthday

Six years tonight...

Six years tonight, Jen and I decided to go to dinner at Ricardo’s, her favorite Mexican food restaurant. We joked about spicy Mexican food and it's rumored effect of causing expectant moms to go into labor…who knew that it would do the trick for her?

I was awakened very early on Sunday morning, August 3, 2003, with the announcement that she was in labor and that we needed to head to St. Francis NOW!

While rushing there seemed important at the time, our impending delivery was on his own time schedule…

At 4:29PM, Nathan Edward Russell joined us and our lives were forever changed…we did not realize just how much at the time.

The last six years have been a roller coaster of events and emotions and I am so happy that I can post a message about Nate’s SIXTH birthday. If we had believed the neurologist that delivered his diagnosis and followed his advice, we might not have even celebrated Nate’s second birthday.

Thankfully, we took the opposite approach and on August 3, 2009, we reach yet another milestone in his life!

Nate has proven time and time again that he is an exceptional little boy. Numerous times over the last six years, I have thought that we were going to lose him. Each and every time, he has proved his resilience and demonstrated that his mission is not complete.

I have posted the following quote from Aron Moss before and I think it is appropriate on this special occasion. I feel it is so true about Nate, all of our SMA kids and for ANY handicapped child.

Every birth is a gamble. A soul enters the world innocent and pure. But it may not stay that way. This world is a maze of diverging pathways, both good and evil, and the choice is ours which way we go. Once a soul enters a body, it is free and therefore vulnerable to corruption. While acts of good elevate the soul, every act of evil makes a blemish on the soul.
Some souls are so lofty, it simply isn't worth the gamble. These souls are too precious to risk being compromised by life in a body. They are too high to come down to this world. But the other option, not to be sent down at all, to never reach this world, would mean that we would miss out on meeting these holy and lofty souls and hearing their message.
So these souls do come down. But in order to be protected from the potential evils of an earthly existence, they are sent down into a body that will not compromise their holiness. They enter this world in a form that is above sin, above evil. From a purely physical perspective we call them "disabled" or "handicapped"; from the perspective of the soul they are protected. They will never sin. Their sojourn in this world is often brief, and in terms of this world may seem sad. But they have retained their purity. And they have fulfilled their mission.
These special souls remind us that true love doesn't need a reason. We often love others for what they give us -- we love our children because they are cute, smart, and high achievers; we love our spouse for the pleasure and contentment they give us; we love our parents because they care for us. This is love, but it is not pure.
When a child is born that will never achieve worldly success, cannot provide the usual source of pride for his parents, all extraneous reasons to love him fall away and what's left is the purest love that there can be. These children are lovable not because of what they do for you, and not because of what they will one day become, but simply because they are.
These pure souls remind us what love should be. Only such a pure and holy soul can elicit such a pure and holy emotion. We can only stand in awe of them, and the parents and friends who care for them. And we can only thank them all, for giving us a glimpse of what true love really means.

Thank you to all of our family and friends for their love and support over the years…Jen and I really appreciate it!

I know that you all join me when I say “HAPPY BIRTHDAY, NATHAN….HAPPY SIXTH BIRTHDAY!!!”

Trey

Nathan's Notes by Erin Breedlove

Erin Breedlove hosts a blog titled "Empowering People and Changing Lives". A few weeks ago she contacted us about doing a little story on Nate and we agreed. You can view her story on Nate by clicking on this link http://empowerpeoplechangelives.blogspot.com/2009/07/nathans-notes-sma-you-cant-bring-him.html or by clicking on "Nathan's Notes" under LINKS on the right side of the page.

ERIN -- Thank you for a great story on Nate! He is an amazing little boy and we appreciate you sharing his story with others!

Trey & Jen