Thursday, October 01, 2009

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

Sunday, September 20, 2009

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

Thursday, September 17, 2009

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

Wednesday, September 16, 2009

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.

Tuesday, August 25, 2009

Monday, August 24, 2009

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

Monday, August 03, 2009

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

Sunday, August 02, 2009

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

Tuesday, July 28, 2009

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

Thursday, July 23, 2009

Update

The boys are doing really well! We had a little "cool" spell here in Tulsa, so we enjoyed a couple of days at the park and taking some walks. They have still enjoyed the pool though and Owen has become quite the little swimmer! He only had four sessions of swimming lessons and the difference is amazing! He's a fish!
Nate has his communication device back and it now has internet access. He played on it some yesterday with his teacher and speech therapist and we found a website that he LOVES! It's very fun and educational - http://www.starfall.com/. He's also still "talking", mostly telling us his favorite tv show (spongebob) and his favorite movie (Jonah).
Owen went to the dr. this week to have a little lump checked out in his neck. Turns out it's just a normal lymphnode. (Crazy, worried parents right!). We also had his ears checked because his left ear had failed a hearing test done by his speech therapist. It does have a little fluid on it, so we have to keep an eye on that. No infection yet, but if it doesn't come out in 90 days, we might be looking at tubes. This is probably the reason he's delayed in speaking. However, I swear his hearing is perfect. He hears things I don't. Maybe his right ear is super power hearing??? LOL.
Well, I'm off to Kansas City tomorrow to see my brother and sister-in-law. First time I've been gone overnight in 4 years, so I'm a little nervous (well a lot nervous) about Nathan. But, we have all our nursing shifts covered and Nana (mother-in-law) is coming in to help Trey. I'm sure everything will be fine and hopefully I can relax and have fun. I sure will miss my boys (all three of them!).

Nate turns SIX YEARS OLD soon! We'll have lots of pics!

Thanks for checking in!
Jennifer

Monday, July 13, 2009

Youtube Video of Owen in the Pool

Owen is taking swimming lessons and doing very well! He LOVES to climb the wall (and that's really not part of the swimming lessons, he picked that up himself)!

http://www.youtube.com/watch?v=bVLh9nyHkg4&feature=channel

Pic of Owen


Owen is trying out a new fashion style. Actually he's starting to undress himself. He's got pants and shorts down, but tops he hasn't mastered yet.

Monday, July 06, 2009

4th of July

We had a great weekend! Friday both boys got in the pool and did great! Nate loved watching Owen play. His nurse Jennifer played with Nate in the pool which he really enjoyed because he has a HUGE crush on her!
Saturday we thought the parade was going to be rained out but it stopped raining a little before it was to start. So, we gathered up the boys and went to the parade. Nate was smiling the whole time ear to ear! He was so proud of his chair! As we started the parade, it was sprinkling a little bit, but as we got to the farthest point from our house, it started pouring! I mean really pouring! Luckily, Trey had bought a golf umbrella for shade in case it was really hot. We brought it and were able to keep Nate's equipment dry. Nate thought it was funny. Didn't bother him a bit! He loved feeling the rain on his legs and feet. Of course, it stopped raining as soon as we got to our house. We got some good pics though! It turned out to be a great parade even in the rain!
Later that day we took Owen out early for a few little fireworks and some sparklers. Then we took Nate out later and did some bigger ones. We posted a video of some of that. Once again our neighborhood was lit up everywhere with firework shows at every corner! I LOVE that we don't have to go out anywhere and can stay home and enjoy the 4th in our own neighborhood!

Nate Watching Fireworks (Youtube Video)

http://www.youtube.com/watch?v=CvUwb3MqMwA

Owen Watching His 1st Fireworks











Before the Parade Pics



During the Parade Pics (Before the Downpour)




Nate loved every minute of it!

After the Parade Pics



As you can see, we are soaked!

Playdate with Charlie and Evelyn








Here are some pictures of the boys playing with Charlie and Evelyn. Charlie was loving putting the tunnel over Owen's head. Owen thought it was funny like one time and then he wasn't too thrilled. But I thought it was hilarious! Nate thought it was funny too!

Thursday, July 02, 2009

Busy Holiday Weekend Coming Up

Today we had my friend, Michelle and her two kids (Charlie and Evelyn) over for a play date. Nate was up in his chair and loved watching Charlie rough around with Owen. And Evelyn is darling (she's six months younger than Owen). Future couple I predict! It was great for Owen to play with other kids. I wish he could do it more!!!
Tomorrow we plan on getting Nate in the pool and Saturday we have the neighborhood 4th of July parade. Unfortunately, it's at 11:00 this year and it's supposed to be 100 degrees Saturday! I've already decorated his chair, but we'll just have to see if we can go. If not, no big deal, because he'll be all patriotic in his chair for the fireworks that evening. Our neighborhood is always fun on the 4th. Lots of kids and fireworks around. They also have a pool party every year with a cookout. It's during the boys' naptimes but maybe next year Owen can go. They are having a military fly by during the party. Hopefully, Trey and I will get to enjoy that as we relax during the boys' naptimes on rafts in the pool!
Everything is going well and Nate is enjoying the summer. Owen just started swimming lessons. Pretty much beginner stuff, but it will help. Next comes August - big birthdays for the boys!
I'll post 4th of July pics after the weekend. Have a great Independence Day and GOD BLESS AMERICA!!!!
Jennifer
p.s. One new thing Owen is doing. He's able to get up in Nate's bed now and wants to do it all the time! He likes to rub Nate's legs and love on him. It's the sweetest thing EVER! Nate's not too sure about it. He gets nervous and afraid Owen is going to hurt him. Owen is very gentle most of the time, but sometimes we have to get him down and of course, Owen screams bloody murder! He loves his big brother! Touches my heart!

The Boys at Incredible Pizza












We had a great time at Incredible Pizza last week. Owen gets to burn off a lot of energy (which is great for me!).

Owen at the Aquarium


The sitter took Owen to the aquarium last week. We are planning on taking both the boys soon.

Tuesday, June 30, 2009

You Tube Videos

For those of you new to Nate's blog, we also have videos of Nate and Owen on Youtube. The account name is - rer3family.