Christmas 2009

I have SO many pictures to post, but unfortunately our internet/computer has been acting up. I will keep trying! We had a great Christmas and I will post more soon.

Christmas with Pop and Grandma Annie

Our Christmas celebration started early! Pop and Grandma Annie came in last weekend and the boys were thrilled to get to open some presents! The boys did great and Nate even showed off driving his power chair for them. Fun, Fun!

Now, looking forward to Christmas Day with Nana, Grandpa Wayne, Uncle Jeff, Aunt "B", and Gammy!

A couple more of Bass Pro Shop (Owen)

Bass Pro Shop

We took the boys to the Bass Pro Shop last Friday to see Santa and his "Wonderland". Santa wasn't there when we went, but that's okay because they saw him at the mall. It actually worked out really well, because it wasn't crowded at all and they were able to play with all the fun stuff in the kids area. Owen's favorite was the monster truck display. Nate liked the target practice with dad, shooting stuffed animals (UGH!). Not quite sure how I feel about that! :)

Grandpa and Grandma Judy went with us and we all enjoyed it. Luckily Owen was feeling better. He had been suffering from a pretty severe cold earlier last week. He started Mother's Day Out at our church, Asbury Methodist, and was only there two times, and got sick. That was my biggest fear and why we had waited so long to enroll him. But, that's life and he's going to get sick. I was just trying to delay the inevitable. PRAISE THE LORD Nathan didn't catch it!!! We were very careful! My mom and I both caught it, but Nate stayed well. The hardest thing was keeping Owen out of Nathan's room!

Enjoy the pics from the Bass Pro Shop.

Jennifer

The Boys at the Mall

We took the boys to the mall to visit Santa today! What a great day! Here's some pics of them with Santa (and me - Owen wouldn't sit on his lap). And also of Owen on the carousel. Too much fun. We will go see Santa again next week at the Bass Pro Shop with Daddy!

Nate driving his power chair at the school gym with his classmates

http://www.youtube.com/watch?v=Oyn1-ch4Rao

Oh man, did Nate have fun today! He's been practicing driving mostly outside because it's been so nice, but now we're trying to go to the school gym at least once a week. His teacher suggested bringing his class to the gym to watch/play while Nate is there. Nathan absolutely LOVES it! They played follow the leader and chase. He of course tries to run over everybody! The kids walk with him and interact with him. It's so touching, since he's not around kids all that much. He is doing so well driving - I can't believe how far he's come in such a short time. All he needed was a different system. Thanks to Denise, one of his speech paths. She suggested it. It has been a long time waiting, with frustration on both our end and Nate's end, but now he finally can DRIVE! Love it!

Pics of Owen

A couple of good pics of Owen at the park - HE LOOKS SO OLD! What happened to my baby???

Halloween 2009

We had a great time on Halloween! Uncle Jeff, Aunt "B" and Gammy came over for lunch and we all hung out together. Then we went to a party across the street before all the trick or treating festivities began. Owen and Nate both went to a couple of houses nearby to trick or treat. Nate did pretty well, if he was moving! He was kind of fussy and irritable (heart rate up also), if we were just hanging out passing out candy. Not sure what was wrong, but we ended up taking the boys inside a little early. They had plenty of fun time though! They both were a big hit in their costumes - looked very cute !!! And believe it or not, Owen kept his hat and jacket on the whole time! Can't wait for Nate to get to taste all the candy later today. He loves chocolate!

October was a great month filled with fun activities. Now it's time to focus on Thanksgiving and Christmas - I can't believe it!

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