Monday, June 27, 2011

Double D Turns One

Wow, what a four-day extravaganza of gifts, fun with friends and family, and just pure exhaustion. Dex's birthday was like the Hanukkah of all birthdays...every day between Wednesday (his actual birthday) and Saturday, we seemed to celebrate somehow. You know what though, Gavin and I have been waiting a heck of a long time for this. From the moment we were even thinking about having another baby to, well, maybe a month or two ago, we were crazy worried about Dex having issues. Does he have issues? Yeah. Issues of being obsessed with eating paper, and issues of trying to walk too fast that he falls head first into the carpet. Gavin and I still get mesmerized just by watching all that he can do; we will never take these seemingly somewhat insignificant milestones for granted. Here are some pictures of the whirlwind event. HAPPY 1ST BIRTHDAY DEX!!!

Dex's birthday; we drove to Salina for a well check with his pediatrician. Yep, that's right. Shots on the big day. Here are the boys with their cousins Kellie, Tanner, Cadie, and....the newest addition to the O'Donnell family, Bella.

Soaking up some sun at the Claflin pool. Kendi was telling some really funny jokes.

The whole crew at the pool for Dex's birthday. Front row: Kendi and Dex, Owen and myself, JaKyler. Back row: Aunt Tay-Tay and Alyx, Paige, Desi and Carly.  Not pictured: Kim because she was taking the picture.

Dex opening his first present, a Diego motorized bubble machine from us. It was a big hit at his party!

Round one of cake eating. Mmmm.

Yep, I think he liked it. The blue frosting stuck to everyone like white on rice...even those of us who didn't actually eat it.

Getting some sprinkler action in with neighbor Aiden. Aiden is two months older than Owen.

Dex playing with his brand new picnic table and umbrella from Grandma and Grandpa, showing off his mommy-made birthday shirt.

"Happy Birthday to You...."

Cake eating round 2

Good job Owen! Way to pose buddy. (With Aunt Rachel)

I'm pretty sure cops should issue HUI tickets....Holding Under the Influence. Don't think Gavin should have been holding Dex at this point. Have another dad...

Dex and his girls stopping to pose for a picture. (Neighbor Sarah, Paige, and Kyla)

Crazy kids...Sarah, Kyla, Max, and Paige playing on Owen and Dex's brand new playset!

Dex trying to be big like the rest of the kids

Almost the whole crew at Dex's party. Not pictured: Ryann and Neighbor Lyndon

Owen hot off the swing set with Kendi and Aunt Kim

Thursday, June 23, 2011

Update on Owen

Man, it's been difficult to get on here and blog lately. First of all, these are Owen's school pictures he took this year in preschool. He is such a big boy; I couldn't believe how awesome he did!
Gavin and I just got back (well, in the last couple weeks) from a doctor's appointment extravaganza in KC. We saw Owen's geneticist and epileptologist. As you probably know, Owen's diagnosis and condition can get very confusing if you don't live and breathe it every day like we do. Let me give you the shortened version of our doctor's visits. The geneticist and the epilepsy doctor disagree about how Owen contracted (if that's the correct word to use) Dravet's syndrome, but they are mostly in agreement about the fact that Owen probably has Dravet's syndrome. In other words, the geneticist doesn't believe that the mutation of the SCN1A gene that Gavin passed down to Owen is causing the Dravet's....he could have contracted it another way--a way we haven't discovered yet. She gave us the "well, if three doctors are telling you that is what it is, then I would probably listen to them" answer. Ugh. So frustrating. On the other hand, the epilepsy doctor thinks this is too much of a coincidence that Owen has this mutation and also shows characteristics of Dravet's. The mutation and the syndrome almost always go hand-in-hand. Whatever. It's just absolute confusion to us. We may never have a concrete, FOR SURE diagnosis, but this is as close as we are going to get for now. As far as what to do next...I am checking into a medication that is widely popular for kids with Dravet's. However, it is not FDA approved in the US yet, therefore, it has to be purchased in Canada and won't be covered by insurance (way expensive). We are at that point though where we will go to any lengths to try anything! The VNS chip is also in Owen's near future. It will be a one-day in and out surgery implanting a chip in Owen's chest cavity to hopefully help decrease the seizures. I'll keep you posted, obviously.
On a lighter note, I have a wonderfully funny story to tell about Owen. I was feeding him the other day, and the Braum's commercial with it's addicting little jingle came on the TV...."From our farm, to your store, only Braum's gives you more....only Braum's gives you so much more...." Yeah, that one. I got pretty close to his face, and started singing it. LOVED IT. Smiled from ear to ear, cute dimples and all, and even laughed with....or It didn't stop after just one time, oh no. I sang that song to him off and on for the next few hours, and he continued to think it was amazingly funny. Of course, the second I got the recorder on my camera ready, all he did was stare at the camera with a scowl on his face. These moments of meaningful smiling and laughing are what keeps us trucking along. Even if it is smiling and laughing to that stupid Braum's song...I can't get that song out of my head now.