Tuesday, December 20, 2011

Uneventful is Good...Snow is Bad

Well, as the saying goes, no news is good news...and that's exactly what we got at Owen's 6 month checkup yesterday at Children's Mercy. This was the most uneventful--but pleasant--appointment Owen has EVER had. We discussed how significantly his seizures have decreased, tweaked his meds a little, bragged about how well he's doing...heck, we probably spent more time persuading Dr. Abdelmoity that Owen's chair is a wheelchair and not a stroller. He just couldn't believe how good looking it was. You know that since we had such an awesome appointment that our luck had to change at some point along the trip. Oh boy did it ever. Being a little nervous about the approaching snow storm, we spent the entire morning rushing around trying to get on the road and home before the storm hit. Well, we were a couple of hours too late. To make a really long story short, it took us over 5 hours to get home. Along the way we witnessed probably over 20 vehicles either wrecked or in a ditch. We drove 25-30 mph on I-70 about half the way home. And the best part? A mile or two outside of Salina, Dex puked all over himself. He was wet, stinky, and wanted his mommy to hold him. Horrible, horrible, trip....but we're home, Dex is well, and I guess that's all that matters now.

In other good news, the expensive medicine that Owen relies so heavily on now is--duh, duh-duh, duh!-FDA approved! It's only a matter of weeks before we can  hopefully get insurance to cover it, making it a whole lot cheaper. This will save us (or should I say all of you Owen's Warriors out there who so graciously gave Owen his nestegg) thousands of dollars a year.

Last piece of good news...(everyone knock on wood right now please) Owen has not been sick. Not at all. By this time last year, he had already been hospitalized with pneumonia and on his way back to the hospital about a week from now. What a change we have seen from all fronts! Way to go buddy!

We hope you all have a wonderful holiday! Unless something blog-worthy happens in the next week or so, see you in 2012....

Sunday, December 11, 2011

Here Comes Santa Clause...

This weekend Gavin and I took the boys to see Santa at the Claflin Library. This was Dex's first encounter with the jolly man in red. He was the first kid to spot Santa sneaking in the back door; I have never in his almost-18-month-life seen that kid so stunned. So without further ado, here was the product of our venture....

Ah, Owen, my little sweet angel. Posing with Santa like he's done it for years. I will say, Owen seems to love Santa. Every time I sing "Santa Claus is coming to town" his face fills with smiles and giggles. Heck, every time I mention the word Santa he gets a smile on his face. He seems to get it. And I know what some of you are thinking, and yes, he might be giggling at my horrible singing, laughing at me not with me, but I don't care. I will be the first to make a complete fool out of myself to make my child happy.

And then we have the other one.....

I made sure to have my camera on before I handed the little brat over to the big man, knowing how this would pan out. I think the picture speaks for itself.


Thursday, November 10, 2011

The Best Singer in the Whole Wide World

Our good friends Art and Kristen Baker just recently had their baby girl Camdyn. While visiting them in the hospital, Camdyn's big sister Calyn (who is a few months younger than Owen and crazy about the Klug boys) wanted to sing her Halloween songs she learned in school. She serenaded Owen for what seemed like an eternity...it was the greatest eternity of my life. I have NEVER seen the focus, appropriate interaction, and just pure happiness on Owen's face for this long! I could watch this every day for the rest of my life and die a happy mommy. :)

Update on Owen: Owen is doing great right now. We have seen a couple zero seizure days in the last week or so (or at least we didn't notice any that is), which is nothing short of miraculous. He has had 3 (what we believe to be) zero seizure days since the seizures began at the age of 2, so needless to say, these kinds of days are few and far between. Keep in mind, Owen is probably still having silent staring seizures, but we are going off of what we see. I am in the process of trying to get his meds altered just a little bit, hoping to get his seizures down to less than one a day. Though he's had a couple of great days lately, he's still having on average probably 3-6 spells in a day. So to sum it up, I am ecstatic that the seizures are so low at this point, but I'm still not satisfied; I feel like we can do better.
Socially and physically, Owen has continued to improve slowly but surely. One of Owen's PTs, Karla, gave me a great report at school on Wednesday. He stayed awake--which has been a struggle lately--and he took several steps in the gate trainer for her. At home, about a week ago, he held his cup completely independently for about 6 seconds (Sidenote: Owen could drink an entire sippy cup full of juice all by himself at the age of 1.  This skill was completely lost and is beginning to return. Yay for that!) Emotionally, Owen never cries. We can just tell he is feeling better and is more in tune with what is going on around him. He is a happy kid again. He no longer has the severe constipation issues he once had, which attributed to most of his crying. Once a kid who needed an adult dose of Miralax twice a day, he is--I'm happy to say--only taking Miralax maybe once a week!
Obvious to those of you who have seen Owen in the last year or so, his wrist is very turned in and is extremely stiff. We were told that this would continue to get worse and he would eventually lose all function in his arm and hand. Well, I am happy to report that since the seizure decrease, his wrist function has drastically improved! It is much more flexible; he has even regained the skill of clapping and actually making NOISE! We are ecstatic about this improvement, as well as all the others mentioned.
We will continue to work Owen hard and I know he will continue to improve and gain more and more independence! I haven't said this for awhile, but Gavin and I continue to feel the love and support that you all give to our little boy. This overwhelming feeling has not faded, and we are thankful for all of you unconditionally caring for Owen. He is one lucky kid.

Tuesday, November 1, 2011

AAArrrrgh....Happy Halloween

Halloween was a success. Costumes fit, I sent in for reinforcements (my cousin Kellie and her friend Darion came over from the college to help me with the boys), and the boys pretty much behaved themselves. The only problem? We had to start at dawn in order to get them home by 6:45 when they fall asleep. Sidenote: I smell a Chiefs comeback!

Carving a Jack-O-Lantern with dad the night before Halloween

Dexter the Dragon...one of the few only moderately blurry pictures I could snap of him before he ran away

Ready to Trick-or-Treat

Captain Owen with his talking parrot in tow...Gavin came home from work with this parrot one day. It sings, dances, talks, and even farts...the inspiration for Owen's costume

Owen and Dex at Nana and Papa's with their cousins Alyx, Paige, and Carly

Owen and Dex (obviously not cooperating at this point) with their cousins Ryann, Alden, and Kyla
Go KSU!!!

Happy Halloween everyone!!!

Tuesday, October 25, 2011

K...S....U.....Wild Metro Family Reunion

This post is LONG overdue, but in mid-September my sister Rachel planned another annual Metro Family Reunion at the K-State vs. Kent State football game at Bill Snyder Family Memorial Stadium. Owen has only attended one other K-State football game, and he loved it. He was....one, I think. A lot has happened since that game, so Gavin and I were a little apprehensive to attend. Owen didn't have his wheelchair at his last K-State game, so we sat in the handicapped section this time. I was a little bummed, thinking we wouldn't be able to sit with the rest of the family, but we were right above them, and we didn't feel isolated at all. Owen took a few cat naps throughout the day, but all in all, he had a great time. This was also Dex's first K-State football game. Let me sum up his experience for you: he didn't take a nap all day long, but he was sooooo into the entire experience that he didn't care one bit. He clapped, he yelled, he loved it. He loved it until the next morning when we had to remove his Powercat tattoo off of his face. SCAB. One huge SCAB on his cheek. The red mark--over a month later--is still plastered on his face. I guess we can just think of it as a souvenir from his very first Wildcat game.
Purple pride

Owen catching some Z's before the big game

Our little Wildcat who's not so wild

Family pic during Dex's first KSU football game...it's a miracle they are even looking in the same direction as the camera
It's very important to Gavin and I that Owen gets to experience everything a walking and talking 4-year-old gets to experience. And even though he can't express his excitement most of the time, I know it's just waiting to burst out of him one of these days!

Owen the Trend-Setter

Who knew Owen's stuff would be such a hit with the kiddos? First things first....the van--with the electronic ramp and hollowed out inside--is a playground for every kid in the neighborhood. These kids just can't get enough of running around in that thing. Why? Who knows what is so fun about running up and down a 3-foot incline.

Gavin just recently finished the ramp in the front of our house. Hallelujah, no more carrying his wheelchair up the stairs, which is nearly impossible for my woosy self; it is almost always a two-person job. Wow, did the kids go nuts about this one. Not so much because it is fun to run up and down on, but because they know Brutus (who is tied up in the front yard right in front of the steps) has NO WAY of reaching them if they go up the ramp. Kyla, you're welcome....no more freaking out trying to get from the bus to my front door because you are terrified of my 12-lb. shihtzu...you are safe now.

Notice the man-eating dog by the steps? Ferocious.

And who can forget the wheelchair. Kids WAIT for some adult to come and hold Owen so they can sink their butts into that green lump of comfort. It has to be the COOLEST seat in the house....

Kendall saying to heck with standing up the entire K-State game...Owen has the best seat in the stadium

Alden thought he needed buckled in...maybe if he would open his eyes when he shows off that cheesy smile he wouldn't be so scared to fall out
And last but not least....the walker. Owen has been borrowing a walker (not so much a baby walker, but more of a big kid walker for disabled children) from his preschool for a few months now. We use it every day. And no, not just Owen uses it every day, Alden is hanging on that thing every second Owen is out of it. He's obsessed. Dex is also catching on and climbing all over that thing like it's a jungle gym. Do they fight over it? Yes.

So in conclusion, I really can't understand why Owen's things are so awesome, but they certainly are to the under 6 population. And if they keep kids entertained and friendly to Owen, they can line up and play anytime.

Monday, October 24, 2011

My Not-So-New Job

Last April or May, I agreed to start watching my nieces and nephews, Kyla, Ryann, and Alden starting in August. Soon after, I agreed to start watching my niece Carly sometimes as well. Yep, it's official. I'm a daycare lady. I have waited to blog about it, just for the simple fact that I was waiting to see how it all panned out the first couple months. I'm not going to lie, I agreed to do this for selfish reasons....for the extra spending moolah (not looking to get rich obviously), for the interaction my kids would get with their cousins--especially to give the kids some additional time getting used to interacting with Owen, and for some added QT with the nieces and nephews. Overall, it has gone amazingly well. In case you don't know, Ryann and Alden can be VERY shy. I was extremely nervous about how well they would adjust to my house. Yeah, we've had a few meltdowns. A few clinging-to-the-screen-door-screaming-for-an-hour-and-a-half days, but dang it, that's expected. And I can proudly say, two months later, the kids seem happy here and we have a great time. Here are some pictures of Kiley's Fun-For-All-At-Home Daycare :).....

Summer fun...one of the kids' first days at my house. Owen was napping.

Posing for a picture to put on their mom and dad's cards they were making them...top secret mission.

One of the few times Dex and Alden have happily shared this train. It's a blurry picture, but I don't care...I knew I had to capture the moment before someone lost an arm or was face first in the carpet. 

Enjoying an afternoon popsicle

Playing with Owen's belly button...Dex can find the important body parts...belly button, boobies, pee-pee. Really, I'm not kidding, those are the body parts he has learned so far. That's my boy. 

Owen and Ryann taking a load off

Alden and Carly freezing...they thought they needed to share a blanket

What's with these serious faces anyways? And the Donald hairdo, Dex?

Chillin in Owen's ride before story hour

Alden pretty much never stops cuddling with Owen...loves him:)

This is probably the thousandth attempt at this picture...Alden kept watching the Fresh Beat Band behind me

Switching clothes:)...they were pretty proud of themselves

Ryann and I love to bake while the boys are asleep...here she is showing off her finished product...Owen's birthday treats for school. Look at that face.

I love my not-so-new job!!!!!

Wednesday, September 7, 2011

Birthdays Galore

I feel like it was yesterday that I was blogging about Dex's first birthday. And here we are, two months later, recooperating from the week-and-a-half-extravaganza-birthday-mania. For those of you who need a little catching up, Gavin, Owen, and I all have birthdays within just over a week of eachother....and that's not even counting Halle's birthday on September 29th. Not to be a party pooper, but I'm about birthday-ed out right about now.

Beginning the festivities was my birthday--the Big 3-0. Gavin--knowing I have been dreading this day for at least two years now--surprised me with a once in a lifetime trip to New York City to the U.S. Open....something I thought I could only see in my dreams. The trip was awesome; not only did we attend two sessions of the U.S. Open, but we also made time to see Ground Zero, the Statue of Liberty (from a distance), and Times Square. Here is our trip in pictures:
[Sidenote: Gavin took care of not only our two boys while I was gone, but also my nieces and nephew that I am now watching every day. Props to the best husband in the world for such an awesome birthday gift!]

Arthur Ashe Stadium (holds 23,500); this match we were watching the #1 Women's player in the world, Caroline Wozniacki

The U.S. Open from the top of Arthur Ashe Stadium

Watching an interview with Jo-Willy Tsonga...one of my favorites. He was ten feet away!

Jim Courier (or should I say the back of his head) with two guys I feel I should know, but can't come up with anything to this day

New York skyline atop Arthur Ashe...awesome

An ESPN interview with #1 Novak Djokovic; minutes before this interview, Novak walked RIGHT behind me. I could have reached out and touched him!

One of my faves Fernando Verdasco; I think I like him so much because he looks like Gavin to me :)

James Blake...love him. An inspirational American tennis player.

The tantalizing trio in front of the U.S. Open

Times Square baby!

By the harbor a few blocks down from Ground Zero and in front of the Statue of Liberty...just a whole lot to look out down here


Lady Liberty

The new Twin Towers, ten years later...pretty darn humbling

Inside a 9/11 memorial museum; these were pictures, notes, and other memorabilia gathered shortly after 9/11 attached to a Statue of Liberty look-a-like

Duh...Wall Street

Another 9/11 memorial...a picture of what it looked like that day

Me at one of the greatest places on Earth

Andy Roddick

Maria Sharapova...and against Gavin's uncle Dale's wishes, NO I did not get a picture of her naked. Wow, can this girl hit; she was hands down the coolest one player to watch in person. I was lucky to see her, too...she lost the next round.

Poor Gavin. His birthday was kind of sandwiched between mine and Owen's, so it didn't probably get the attention it deserved. He was off of work, so that was a present in itself. The boys and I (with my first daycare paycheck) bought him a leaf blower that he has been wanting for awhile now (I know, how exciting). Cap that off with dove hunting in the evening, which was kind of a bust due to the lack of birds, and Gavin's big day was in the books. Sucks to be 29....

Finally, O-man turned the big 0-4 on Labor Day. Owen's birthdays are bittersweet for us. On one hand, they represent him getting bigger, older, and harder to transport; they also represent him getting closer and closer to that evil world of older kids, bullies, and school. On the other hand (which is the hand we need to be focusing on obviously), they represent new beginnings and new hope that this next year will be full of improvements and gains. I can honestly tell you that Gavin and I haven't been this motivated and this hopeful about Owen's health and wellbeing for a very long time....years even. Owen spent his birthday eating REAL, non-ketogenic diet cake, having a TON less seizures, and merely just showed up for it, unlike last year (though the lack of nap taking that day made him extremely tired by his party time of 7:00 pm). His seizures are continuing to decrease, and we can only keep hoping for more and more success with the meds and acupuncture. Year 4 is going to be awesome, I can feel it!!!

Grandpa tickling Owen

Owen sporting Papa John's hat

Owen had a Mickey Mouse Clubhouse themed party...because we dance to the Hot Dog song and he cracks up

Kyla, Paige, and Kaelynn...the three Mouseketeers

Kendall, Calyn, and Max....three more cute little mouseketeers

All the kids helping Owen blow out his candles

More help....this time opening presents

Yep....Owen fell asleep in the middle of opening his presents

Max showing off his goods...and trying not to look at the TV behind the camera

Birthday morning! Owen showing off his cool new shirts he got from the Baker's, waiting to head over to the Labor Day parade

Uncle Bill with Owen's cousins and Dex

Max and Owen showing off their matching skull under shirts, though it's hard to tell in this picture
 What a fun-filled, exhausting week and a half!