Upcoming Surgery

Owen is having his VNS surgery this coming MONDAY! It was originally scheduled for June 18th; however, a nurse from the ENT clinic called today and asked if we wanted to fill a cancellation on June 4th....which is a short 4 days away. We are excited to get this procedure over with and see what this thing can really do for Owen. The surgery, so we are told, is an outpatient surgery. Complications are not expected and Owen should either be dismissed that same evening or the next morning. The surgeon will make a small incision in both his chest area and his neck. The chip (about the size of a quarter) will be placed in Owen's chest cavity. A cord will connect the chip to a nerve in the neck. This cord will send pulses to his entire brain and will hopefully stop a seizure before it begins. The chip is controlled by a computer, and it will not be turned on until his body heals. Owen already has an appointment June 15th to turn on the chip. He will be seen by his epileptologist probably every 2 weeks or so for a few months to adjust the pulse rate to make it compatible with the frequency and severity of his seizures. We are crossing our fingers and praying this does at least SOME good! I will update on Owen's condition post surgery.

Whistle While you Bathe and Upcoming Events

Owen found Gavin's whistling extremely comical tonight....so funny he got the hiccups.

While we're at it, I'll post a little update. Owen has two major events coming up in his life. The first will be a surgery, probably in June. He is getting a VNS chip placed in his chest cavity. This is a one-day surgery and will hopefully decrease (not eliminate) the frequency of seizures. He has a consultation on May 21st with the doctor who will administer the surgery, and at that time we will schedule the surgery for probably 2-3 weeks after that. Let's hope this works even just a little!

The second event that Owen has coming up is a vacation! Gavin, Owen, and I are attending the biennial Dravet Conference in Minneapolis, MN this August. The keynote speaker is Dr. Charlotte Dravet (yes, the namesake of Dravet Spectrum Disorder herself). We will leave on a Wednesday, drop Dex off with Aunt Rachel in Kansas City, and spend the next three days listening to speakers, sharing information with other affected families, and entertaining Owen with a lot of activities geared toward his level. Hopefully we will not only gain knowledge on the disorder but also come back with a plan of action on what to do to get Owen living the best possible life. Sidenote: the conference is held (so I'm told) very close to the Mall of America. Just sayin'.

Until next time....

Spring Break Getaway

The boys and I took a mini-vaca over spring break to KC to stay with Rachel, Kevin, Max, and Kendall. This was the VERY first time (that I can remember anyways) that we have gone for really no reason other than just to get out of the house for a few days...in other words, we didn't go for a Children's Mercy appointment of Owen's. The highlight of the stay was taking the kids to Disney on Ice at the Sprint Center. Gavin and I were a little apprehensive about me taking Dex to a "sit down and hold still for 2 hours" type of activity. Boy, were we surprised. He LOVED that show; he was engaged the entire time, which is nothing short of a miracle coming from that kid. Here are some pictures of the week:

Intense stuff

The whole crew at intermission

Who would give a 1 year old an over-sized, sugar-candy coated, messy marshmallow you ask?
Aunt Rachel, that's who...without permission I might add.

Gross

The finale

The trip ended with a visit to Paradise Park. Wow, what a place for small children. Ball pit, cooking classes, water play, face painting, playgrounds, arcade...you name it. And even though Dex threw an absolute, full-out temper tantrum after we left every separate part of the park, I think the kids had a good time.

Is it just me, or is Dex sporting a side pony?

I took one for the team and crawled my wide load into the kids ball pit (aka germ fest) so Owen could partake; he kept grabbing the balls and putting them in his mouth. DISGUSTING.

Big mouth

Dex's favorite station, also the messiest

Animal lover

Yeehah cowboy

 What a great (and exhausting) trip!

Preschool Ball

Owen's school had a ball this morning including dancing, a fashion show, drinks, snacks, and "formal wear." Parents were encouraged to attend, so--thanks to my wonderful husband--I ditched the daycare for a couple of hours to be big O's date. Here's a taste of my stud muffin son...hands off ladies.

Going for the super serious, dashing, debonnaire look



A special thanks to Owen's awesome cuz Max for lending him the studly outfit!!!

No Mom of the Year Award for this Mom

What an awful, awful day. I decided to blog about it and get it over with while I'm still emotionally spent. Today I had a house full of kiddos. And at this particular moment in time, I had a hungry house full of kiddos, ready for their morning snack. I sat Owen on the couch to tend to the empty napkins and goldfish crackers. I look up, only to find the back of Owen's head peering at me from over the couch in an entirely different place than where I left it. Freaking out, I sprinted over to the front of the couch....but not fast enough. Owen fell off the couch, head first, onto the carpet. I don't remember much of the fall, only that he hit the back of his head. It all just happened so fast. I held him, trying to calm him down. One thing you need to know about Owen....he doesn't cry. He just doesn't. I don't know why, but he hasn't really cried in, well, months maybe years I would have to say. He cried, whimpered, sobbed, moaned...you name it, he did it. He wouldn't stop either. To top it all off, this happened MOMENTS before Owen's brand spankin' new case manager showed up to meet us. That poor woman probably thinks I'm not only another unfit mother but a crazy one at that. The 15 minutes she was at our house was spent contemplating taking Owen to the hospital, and pretty much just freaking out. I guess we'll have to reschedule that meeting.
I took Owen  to Clara Barton in Hoisington. They took some xrays of his wrists and elbows. Nothing. They thought it was something called....nursemaid elbow maybe? They sent us to Great Bend Regional to the ER to see a bone doctor. After ordering more xrays, he promptly returned to tell us that Owen fractured his humerus (right under his shoulder). He doesn't need surgery,...only a sling, pain meds, and more xrays later to make sure it's healing. After a quick trip to the pharmacy for some codine, Owen was back at home resting.
I don't know about any of you, but that kid is sure an inspiration to me. I see how tough, and yet angelic, he is...all at the same time. He makes me want to be a better person...and he can't even talk yet. So I'm going to wrap up this blog post, go downstairs, and cuddle with my sleeping little boy....and let him know how crappy I feel for letting him break his arm. I will leave you with a visual:

Valentine's Day Ditty

Owen's teacher sends an empty milk jug home with the kids a week or two before Valentine's Day so they can decorate it, take it back to school, and use it to hold their valentines from other kids. I believe, if I can remember correctly, that last year's "Love Monster" milk jug was one of my very first posts on Owen's blog. Wow, how far we've come in a year. What an ugly love monster that turned out to be. We decided to stick with something a little more boyish this year...so what if the purple tissue paper looks pink?

Owen showing off his Wildcat pride

Happy Valentine's Day!!!

Basement Beginnings

Upon the unfortunate news that Gavin's bosses were moving him to night shift (against his will WITH a slight paycut I might add), we were forced into renovating a quiet basement bedroom for him to sleep during the day. We were not planning on finishing our basement for at least the next 10 years, if ever...but come to think of it, when has anything gone the way we plan? Sidenote: Gavin will begin his first shift on the night shift this Monday; say a prayer for him because he can't even stay up past 9pm. :)

The bedroom; it's blue in case you can't tell from the picture

The family room; that concrete block thing on the right will be our stone bar

Gavin has lived in that basement for the past month, sheetrocking, mudding, texturing, staining, varnishing, trimming, painting, putting in a ceiling...you name it, he's done it. He is currently finishing up on the trim and doors and will hopefully soon begin laying the (free from a former job I might add) stone on the bar he built. Hats off to my man, the Jack of all trades!