Nate Update

The last month has been a busy one. Nate finally started school; we think we've gotten the power chair figured out so he can drive it better; he's been enjoying lots of walks since the weather has been so nice; we took a trip to the zoo; and, he's been doing great in his stander getting in it almost every other day for about 30-40 minutes.

Unfortunately, pool season ended early this summer. It was a strange summer with lots of rain and then cooler temperatures came in earlier this year, so pool time was pretty limited. Thankfully, Nate loves his bath time (when he's feeling good) and is still able to get his water therapy and move freely. He has been able to be off his bi-pap some in the last month. Anywhere from 15 minutes up to an hour off of it. He's always off it during bath time and that's why sometimes he struggles in the tub, but for the most part he does pretty well. We usually have warning signs before the bath that it's going to be a short one - if he has a lot of secretions, a high heart rate, and if he didn't sleep very well the night before.

Trey had the day off today and we took the boys to Target to look at Halloween costumes and then to Incredible Pizza for lunch and played some games. Owen rode on the carousel and a horse - he LOVED it! We had a fun time.

Nate is doing GREAT!

Jennifer

Nate Update

Nate is doing okay, but not great. We think it's allergies. He has episodes of really struggling, and then he's totally fine. The mornings are the worst. Contributing to the hard mornings is that our main night nurse has been out with knee injuries for the past two weeks! Man, do we miss her! So, as always, with a new nurse (especially nights), there's always some issues. He doesn't sleep as well, among other things. Sometimes, it's just easier taking care of him ourselves, but then that wears us out. But, for the most part, he's been fine. We're getting him in the stander more often and we got him in the pool last weekend (probably the last time, since it feels like fall here already!). It's also been hard because our day nursing is messed up as well. No day nurses on Mondays and Wednesdays, so I'm here by myself. That makes it very difficult to get Nate up out of bed, since it takes two people and then I'm also taking care of Owen.

We are hoping to take Nate to the zoo today - it's supposed to be in the lower 70's and sunny - a beautiful day! I have a sitter coming to take care of Owen. Nate's morning didn't start out so good, but he seems great now, so we're still planning on going. He will love it!

Nate is also getting ready to start school again. We have his IEP meeting next week to set up all the guidelines and go over all his paperwork and then we should be good to go. He will be transferred to North Elementary this year, which means a new teacher and therapists. That will be a big adjustment, but hopefully, everything will work out. He is actually supposed to be in Kindergarten and when he actually goes to the school, he will probably go to that class instead of the early child special needs class which is for 3-5 year olds.

Nate's has been working on his eye gaze communication device and he is just not cooperating! He likes the switch better. We will be looking into using a switch which will work as a mouse for him to use, but also keep trying on the eye gaze.

Thanks for checking in!

Jennifer

A Couple More Pics from Nate's 1st B-Day

Nate's 1st Birthday

Since Owen just turned 1, I went back to look at Nate's 1st b-day pictures. It brought back so many memories. I hadn't looked at these pictures in a long time. Since we started this blog long after Nate's 1st birthday, I thought I would share some of these pictures. He's come a long way! What a big boy he is now!

Jennifer

Nate in his Stander (YouTube)

This video is a little long (8 minutes). It shows us getting Nate into the stander with the lift, going into the living room and then him in the stander for awhile without his bi-pap on!

http://www.youtube.com/watch?v=Vh1X-aCASAI

Owen's 1st Birthday

Our baby is ONE! Unbelieveable how the time flies! We had a great weekend and celebrated with Nana, Grandpa Wayne, Gammy, Grandpa, Grandma Judy and Uncle Jeff. Nate came out into the living room to watch Owen open presents and was a good boy! He was so tired from being up a lot the night before, but he didn't complain and didn't seem to get jealous that Owen was getting all the presents. He seemed to enjoy just hanging out with us. It was a really fun day! There's tons of pics to follow!

Owen Playing With and Feeding Me Birthday Cake

Owen Eating Pizza

We had pizza for lunch and Owen got to taste it for the first time. He LOVED it! Weird thing is, when we gave him a piece of his cake to eat, he HATED it! And even more he HATED ice cream! The faces he made were too funny! However, he did love playing with the cake and icing, throwing it on the floor and feeding it to me.

More B-day Pics

He got the Radio Flyer Wagon from Nana & Grandpa Wayne and it was a hit! By far, his favorite present - because he can walk behind it! He smiles and laughs and acts so proud the minute he starts pushing it - too cute!

Group B-day Pics

Owen Random B-day Pics

Long Update and Pics Coming Soon

Owen will be ONE YEAR OLD tomorrow! We are so excited! We will post new pics and videos that we take over the weekend in the next couple of days. Sorry it's been so long since a recent post, but we've had our hands full. Nursing issues, nursing issues and more nursing issues. It looks like things are going to work out and we might have FULL coverage (first time in I don't know how long) but it's been crazy around here with either no nursing or me training nurses and having Owen (who's becoming a little wild one!).

Jennifer

Nate in His Portable Lift (YouTube)

http://www.youtube.com/watch?v=M8NngfngCCU

Nate Back in the Stander

Finally! It took forever to get his new splints and then when we got them, they didn't fit him right in certain places. That was taken care of and he's been back in the stander for a couple of weeks now and doing great! The stander is so important because it is good for his bones, posture and spine. It also helps with circulation and respiratory issues. He usually can be in the stander without his bi-pap but because we are just starting to stand up again after a long time off, he has it on. This stander is great because it has wheels so we can take him around the house. He's in the living room here watching Spongebob (of course!).

Owen's Favorite Thing To Do

Nate Blowing Out Candles and Tasting His Cake

Nate Opening Presents

Nathan is 5 YEARS OLD!!!!

We are so proud of our little (big) boy! What a blessing to celebrate 5 years with him! Although Nate has had some rough times throughout his five years (he's a fighter and the toughest kid I know!), he's lived a HAPPY, HAPPY life and is loved by so many people! To the neurologist who told us when Nate was first diagnosed at five months old - "I know of a great hospice; there's nothing you can do; just take him home and love him; and he won't live to be 2 years old" - YOU WERE WRONG, WRONG, WRONG!!!! And thank you Lord for leading us in a different direction and not listening to him! These five years with Nate have been the hardest but yet the HAPPIEST time of my life. Trey and I are completely and totally blessed that God chose us to be Nate's parents and love him more than words can say!

Nate had a great birthday weekend and seemed to enjoy this one more than the previous ones. He loved all of his presents and cards. We had a small family celebration which was perfect. It was a four day event. Friday, Trey and I took him to the aquarium which he really enjoyed (it was a little too crowded, but that seemed to bother me and Trey more than Nate). Saturday we all got in the pool and had a nice family day. Sunday was the little party with presents and cake. Monday Trey and I took him to see the Veggie Tales movie and I think this was his favorite! There were problems with the sound at first, so it was like we were watching a Veggie Tales silent movie, but Nate didn't care if there was sound - he was smiling so big! They finally got it fixed and it was a great movie and a treat for Nathan!

So get ready for picture overload. We'll post a video of Nate in his portable lift later this evening or tomorrow.

Thanks for checking in!

Jennifer

Nate B-Day Update and Pics Coming Later Today!!!

We've been very busy and haven't had time to post and there's a ton of pics and a video to download. Hopefully all will be posted by this evening.

No Pics/No Youtube, Just a Short Update

As you can tell from all the previous posts, mostly pics and videos, Nate and Owen have been in the pool a lot. The rainy weather has passed and hot summer has arrived! Mostly, because it has been so hot, other than the pool, we've been staying inside, going out for drives, going to the movies, running errands and driving his power chair at school. Next week we will take Nate to our church and he will drive in the gym there. I think that will work better - it will be cleaner, cooler and just a nicer place for him to drive. (Plus, we can stop and say a prayer on the way out!)

Nate got some new foot/ankle splints, which he didn't tolerate very well at first, but after some adjustments and wearing them a couple of times, he's doing much better in them. He hasn't been in the stander in a long time because we've been waiting for the splints to arrive and then for him to get used to them. Hopefully, this week he will get in his stander again.

Nate also got a haircut - it was so long! I saved some of his hair, which I haven't done since his very first haircut. I love the longer curls, but Trey prefers the military cut. Either way, he's our handsome redhead!

For some reason, Nate has been struggling some in the mornings. He has really thick secretions and we've had some scary times with him right when he wakes up. We have to cough, do the vest, breathing treatment right away (which is not normal). Then once we get him settled, he's fine the rest of the day - no temp, lungs clear, etc. We think it might be allergies??

Owen is standing on his own, well for about three seconds anyway. He crawls so fast! We are so happy and blessed that we have a child who is healthy and will be able to walk! I'm preparing myself for never sitting down and watching his every move! YIKES!

Thanks for checking in everyone!

Jennifer

Smiling Nate in a Hat

Family Pic in the Pool

Pics of Owen

Nate in His Ceiling Lift on the Way to the Pool (YouTube)

This is Nate's ceiling lift that we use to get him in the tub, wheelchair, power chair, stander and going out to the pool. We use the portable lift (which we will video later), to bring him out in the living room.

http://www.youtube.com/watch?v=tDB4P97wQ_U

More Owen

Two videos of Owen playing by the pool and laughing in the tub. We plan on getting a video of Nate in his ceiling lift this weekend and then in his bath.


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

http://www.youtube.com/watch?v=fX9p16ePXCk

Pool Pics of Owen

Nate in the Pool (YouTube)

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

Videos of Owen

A couple of Owen playing.

http://www.youtube.com/watch?v=m2EbhUt0aWU

http://www.youtube.com/watch?v=HyzpDXwV3F8

This is one of him in the tub.

http://www.youtube.com/watch?v=mLl7msENaFM

Nate's & His Feeding (YouTube Video)

This is how we give Nate medicines and feedings. As most of you know, Nate cannot swallow and that is why we have the feeding tube.

Here is the link:

http://www.youtube.com/watch?v=F1ud0hEDnVM&feature=related

Nate driving his Power Chair (You Tube video)

Nate's driving at the school. He uses his middle finger on a mini joystick to operate it. He's doing great, but still needs a lot of practice!


Here is the link:


http://www.youtube.com/watch?v=ZJb3wIknyxA

Nate & The Cough Assist (You Tube Video)

Here is the You Tube link:

http://www.youtube.com/watch?v=gXnLAQ-OuVs&feature=user

Nate & his VEST (You Tube Video)

Okay, so now we are going to be addicted to posting the kids on YouTube! We didn't realize how easy it is and I know for family and friends, who live out of town (many of whom have never been able to meet the boys in person), this is a gift to be able to see.

We are posting some of Nate's treatments that he does everyday. This is of Nate in his Vest that we use twice a day. It breaks everything up in his lungs and then we use the cough assist right after to get it all out. These two machines have been lifesavers and have helped keep Nate's lungs clear. He doesn't seem to mind either one - he's a tough little boy! He makes the cutest sounds while doing his vest (they aren't as loud in this video, but you can still hear them). The video also shows his room, which he loves.

Next post is of his cough assist and tonight we will post how we do his feedings and medications. And then we'll probably do one of him in his ceiling lift and portable lift. Then back to more fun stuff, like Nate in the pool and driving his chair. And we won't forget Owen either!

Here is the You Tube Link:

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

Nate in his slings ON YOUTUBE!

Many of you check up on Nathan & Owen and see only pictures of the boys and the "things" we talk about. Now, for the FIRST TIME EVER, we are posting a VIDEO of Nate in his slings!!!!

Like all SMA Type I kids, Nate has EXTREMELY limited movement with his arms and legs. The only time he can really freely move his arms & legs is when gravity is taken out of the equation (when he is in his slings or in water).

We have taken an aggressive approach with physical therapy and are convinced that this has helped him develop all of the movements you will see in this video and future videos as well. Every evening about 7PM, we put him in his slings to kick and turn on music for him to listen to. It is one of his favorite things to do (along with being in the water) because he can MOVE and he loves it! Because of the exercise he gets everyday either in the slings or in the water, he has developed some movement when he is sitting in his chair or laying down. He will move his legs back & forth, roll his arms and move his hands around. We shot this video of him tonight and we'll post others of him in the pool and driving his Power Chair.

Click on the link below to see Nate on You Tube. The video is just over 7 minutes long and and we hope you enjoy it...


http://www.youtube.com/watch?v=rZjMQHoi9yU

Click on "Watch in High Quality" to get a better video and turn the volume up so you can hear all of Nate's cute sounds!

Jen and Trey

Happy Fourth of July! (Part 2)

Here are pictures from Friday evening...

Watching from our driveway

Watching in the street with Mom & our neighbor, Mikey

Happy 4th, everyone!