Merry Christmas!

The boys had a great Christmas! They got lots of presents and we had company since last Thursday - the boys always love attention! We all had a lot of fun!

Many prayers go out to Nathan's friend, Kyle Gundy, who also has SMA Type 1. He is in the hospital battling RSV, but seems to be on the mend! Poor guy was in the hospital for Christmas, but at least he is getting better and surrounded by his loved ones! And I hear Santa visited him TWICE! Not bad Kyle! Hope you get home soon!

Okay, get ready for pictures overload!

Christmas Pics of Nathan

Nana Reading Christmas Books to Nate

Owen sitting on Nate's lap

Owen - Mr. Smiley

Early Christmas Present for Nate

We bought Nate a new TV. It's a 23 inch LCD. His old Tv was 13 inches, so quite a difference! We couldn't wait until Christmas to set it up, so Nate received an early Christmas present and he LOVES it! He would barely turn his head away from the TV and smiled the whole time. Here's a couple pics of him watching Veggie Tales last night.

Owen also got an early Christmas present. Well, sort-of. His was used and a hand-me-down! We got Nate's megasaucer down from the attic for Owen to play in. As you can tell from the pictures, he really liked it! Unfortunately, Nate never really got to play in this because we got it before we knew his diagnosis. But, at least it is getting some use now and it's a joy to see Owen having fun and playing! I'm sure Owen won't mind the hand-me-downs! I'm just waiting for the day when Owen asks for a 23 inch LCD TV in his room! I don't think so!


Jennifer

After the Storm

Tulsa seems to be getting most of its power back. Last week was crazy! But the storm didn't seem to phase the boys. We all survived and really had no trouble because of the generator. That LIFE SAVING generator! And I have to say a HUGE, HUGE thank you to my Aunt Sue for generously purchasing the generator for our home. It was something she wanted to do for Nate, to contribute to his care. And we cannot begin to tell her how appreciative we are! We were looking into buying a generator when we built this house, but I know, without Sue's financial assistance, we wouldn't have bought the size of generator we have now. And it really made a difference in the situation we were in last week. You don't think something like that will happen, but when it does, and you have a child with the magnitude of life support equipment that Nate has, the peace of mind knowing he will be okay is more than I could ever ask for. So again, THANK YOU to my Aunt Sue in Chicago!

Owen happy and warm in our bed

Ice Storm Update

As many of you know, Tulsa (and pretty much all of Oklahoma) has been hit extremely hard by an ice storm. We lost power about 4:30AM on Monday morning and it was restored less than an hour ago. Thankfully, our emergency backup generator kicked in and did exactly what is was designed to do! It ran constantly for approximately 40 hours and kept all of Nate's equipment working properly.

The boys are doing fine and we'll update more over the next couple of days.

Trey

Our Boys Hanging Out Together

Owen Tickling Nate's Feet

Nate Swinging Away in His Slings

Owen Having Fun in His Chair

Owen and Roxy

It's funny, we lay the blankets down for Owen to play and the dogs think it's their bed! It never fails, they always join Owen in his playtime. Owen doesn't seem to mind. He's fascinated with the dogs. Usually both of them are right beside him. We'll have to get more pics of him with both dogs, but this time Roxy was watching over him.

Happy Belated Thanksgiving!!!

And do we have a lot to be thankful for -that's for sure!!!!!! We had a great weekend with Nana and Grandpa Wayne visiting from Dallas. And my mom (Gammy) and Uncle Jeff came over for a Thanksgiving feast - yummy!

Owen is changing almost on a daily basis. It is so amazing to see him grow and MOVE! He is so strong and it's something we are not used to. It's almost like having a first child since there are so many differences. Trey and I are in awe of the little things he can do. Probably more so than parents of healthy children because having a child who is disabled, makes you appreciate the small things that many may take for granted; like Owen's tight grasp, lifting his legs up, his loud cry, holding his head up, and splashing like crazy in the bathtub. It's hard to fathom that he will be crawling and walking soon - I won't believe it until I see it! And, of course, most important, not having to worry about the medical aspects - he can cough, suck on a bottle without aspirating and he can breathe without assistance! It is such a relief! I so wish that Nathan could have done all these things that Owen is doing, but Nate is very special in his own way. I know God has a plan for him and I won't dwell on what I wish he could do or that Owen can do this, but Nate can't. If I did, I'd go crazy. We live day to day in hope for a cure and that Nate will be healed! But in the meantime, we appreciate all that he CAN do and praise God for those things. Nathan is an unbelieveably special child that I can't explain. I wish I could. Only those very close to him truly understand. Unless you are around him and can see it, it's just so hard to put into words. WE LOVE OUR BOYS!!!! We are so blessed!!! Nate and Owen - both gifts from God!

We're hoping to take Nate to the mall soon to walk around and see Santa. I'm also looking forward to the new Veggie Tales movie coming out in January, which we will have to take Nathan to see! He's never been to a movie theatre but I think he's old enough now to sit through a movie and enjoy it.

Happy Holiday Season Everyone!

Jennifer

The Boys Hanging Out Watching TV

Owen Laughing Out Loud!

Owen Holding His Head Up

What a blessing it is to see this - a true sign he is SMA free!!!!!

Nate in his New Harley Jacket from Uncle PaPa

Nate smiling in his stander with his new haircut

Nate at the Firehouse

We went to Mikey's birthday party today. It was at the Bixby Fire Station - how fun is that! Nate had a GREAT time! This is of him trying on the firefighter's hat.

Nate at School

His teacher and speech therapist come once a week and he loves it! This was right before Halloween and they are singing the "orange" color song and he's doing his art project which was making a candy corn. So fun!

Nate in his Stander

Aunt Melissa and Aunt Amy With Owen

Gammy Reading to Owen

HAPPY HALLOWEEN - Police Officer Nathan Russell

HAPPY HALLOWEEN - Owen The Clown

Our Two Big Boys

Picture of the Family

This is right before we headed across the street to a birthday party. We had a great day!

Pics of Nate Reading with Ms. Stephanie and Sleeping Soundly with His Favorite Puppy

Pictures of Owen in His New Chair and He's Smiling!

We love this chair! Of course, yesterday on the news, the top story was that this chair has been recalled! But, we will never leave him unattended while sitting in it. We will use it only for a little bit at a time and when he is sitting up on his own, there won't be a need for it. I guess some kids have fallen backwards out of it and had skull fractures. I just don't see how this can happen if a parent is right there with the child!

Thursday, October 25, 2007

Nate is doing better! We stopped the Tobramycin and we can see a dramatic difference. He still has some slight wheezing and a low grade fever. We will find out the culture results probably early next week and hopefully nothing will show up. Then we will know for sure that he was having a reaction to the medicine.

Nate's power chair is in the works! FINALLY! Permobil is getting it together and we hope it will be delivered within the next couple of weeks. It has been sooooo long since he's had his chair! This one will have a vent tray, so he will be able to have his bi-pap on, which means he can drive at any time. And, the electronics on his new chair should be more suited to his needs and easier for him to drive. I can't wait!

Owen's 2 month check up went really well. He's 15 pounds 9 ounces!!!! 23 and 3/4 inches long!!! He got four shots and didn't have that bad of a reaction. Slept a little more and that's about it. We will go back when he's four months old. Hopefully, no one will be seeing the dr. any time soon and we will all stay well during the winter months!

More Pictures of Owen

We'll get some pics of Nathan soon also. He hasn't been feeling well this last week. We started the Tobramyacin again and he had another reaction - desatting, thick secretions, and overall he's just not the same. So we stopped it yesterday and we've already seen some improvement. He's been running a fever some also, but we hope this is due to teething. Trey took a culture in to be tested to make sure there is no infection.

We received the Echo results and his heart is NORMAL! Good news!

Not much else going on, just hanging around the house. Owen goes in for his two month check up today. Hopefully, he'll get a good report. We know he's gained a lot of weight, that's for sure! He's a big boy! And HE'S SMILING! It's too cute! Haven't been able to really catch it on camera, but hopefully we will soon.

Please keep Nathan in your prayers, as we hope he is not coming down with something.

Thanks for checking in.

Jennifer