Thursday, August 18, 2011

All Sorts of New

This has a been a big week in the Klug household! I have to say this first, I can't hold it in any longer....OWEN IS OFFICIALLY OFF THE KETOGENIC DIET. And I must say, it's a little weird. Owen and I haven't experienced life without a food scale for a year and a half now. It was so weird yesterday just putting random amounts of food in a container and feeding it to him. Now, yes, this is an exciting day we have been waiting for, however, I am still feeding him the same foods, just not measured. We need to ease him back into this, and I honestly don't think at this point that he would neither enjoy nor tolerate other foods. After a couple of weeks of the unmeasured same foods, I will slowly introduce other foods such as oatmeal and sugar-free pudding. Can you HEAR the excitement in this post?!!!! Because it's there, trust me.

Owen also had his first day of school on Wednesday. He hadn't seen his teachers in 2 and a half months, and boy, has he come a long way (in our eyes anyways) since last May. Let me compare last May to now:
LAST MAY: Could not sit independently, was only babbling once in a great while, smiled but not very often, had a little trouble with lethargy, and had on average 8-13 seizures just at school alone
NOW: Sitting independently!!!! This just happened in the last week or so. He hasn't been able to do this since shortly after he started having seizures almost 2 years ago. Pretty amazing stuff to us. Babbling? Oh yeah, CONSTANTLY. We can't get the kid to stop talking and go to sleep, which is part of the problem we're facing at the moment. Owen also smiles and laughs ALL THE TIME now. All it takes is a little bouncing or a funny joke, and he's cracking up. Owen is just overall reacting meaningfully to stimuli in his environment, which is something he hasn't done consistently for years now, if ever really. As for the seizures, they have decreased drastically but still need some work. He only had ONE seizure at school today!!!! Owen has started two new meds since the end of school. He started Depakote in June, which--in my opinion--gets much of the credit for all of these great improvements. He also started Chlobazam last night....we'll see how it goes. As of now, it's too soon to tell any difference. We are for now hanging on to the small positives we see out of Owen hoping for more to come...after all, they are HUGE positives to us!

Owen on his first day of school...the sun was really bright and he didn't want to look up at the camera. He looked good for the ladies though:)

Owen's new preschool classmates...sorry the picture is so small, but the bigger size is too blurry. Owen is sitting up on his own too, good job Owen!
 Last thing I wanted to share was how Owen and I's meeting with our new internet friends Tracy and Sophie went. A little background info: Tracy is from Wichita but lives in Florida. Sophie is her 3-year-old daughter who also has Dravet's Syndrome like Owen. We met in Wichita on Tuesday for lunch. Of course, Owen slept through the entire meeting, so he never really got to meet Tracy and Sophie. Tracy is very knowledgeable; I have learned more from her in the last few weeks than from any doctor Owen has ever seen. Sophie can walk, hold her own cup, and just got her smile back a couple of months ago. Sophie has not had a seizure since the end of July, so she is doing really well. Like Owen, she lost every skill after the seizures began. They give us hope that we can find that miracle combination that will control Owen's seizures to the point of him possibly walking and talking will happen! After our visit, I honestly was a little angry though. I have found from looking at Sophie, Owen, and other children on the internet, that Dravet's Syndrome leaves children with a very distinct look. They all have something physical in common...maybe the lips and the eyes, I don't know...there's just something about them. So how could Owen go SO long being undiagnosed when his geneticist looked very extensively into his physical makeup? I just don't get it. It seems so simple and obvious to me. At least he is diagnosed now and all we can hope is that very soon his seizures will be under control and he can progress even more than he already has! This feels like a new beginning for Owen, and I just have this new found hope and feeling that we are very close to good things happening for our little boy.

Saturday, August 13, 2011

BOCK Poker Run

Once again, Gavin and I are finding ourselves blown away by the kindness of others. Today the Bikers of Central Kansas (BOCK) held a Poker Run for Owen, that also included a dinner and raffle. Randy and Dian Long, who were in charge of the event, approached us months ago about doing a run for this has been in the works for a very long time! Two Sundays ago, the boys and I crashed one of their monthly meetings so the bikers could meet Owen before the event. Wow, were they so incredibly nice to us! They were all very interested in Owen's condition and personality and were extremely eager to help him. We have met some awesome people through this organization! Thank you so much BOCK for letting Owen into your hearts and for holding an AWESOME fundraiser for him!!!

Owen rested up and ready to go in his "Owen's Road Warriors" t-shirt

Owen with some of the bikers at the Odin Store--one of the stops on the Poker Run. We were amazed at how many participated!

Owen with one of his new biker buddies--this nice lady just couldn't keep her lips off of Owen! He just has that affect on women I guess :)

Randy and Dian Long posing with Owen...what great people!

Grandma and Grandpa thought it would be a great idea to put Owen on a bike...

Yep, Dex thought he needed a turn as well...and no, they weren't scared the boys would poop on the seat...the leather was just too hot for their little booties, which is why they are both sitting on a towel

The BOCK went all out with the advertising...Owen's name was EVERYWHERE! Here is Owen posing with one of the banners they displayed at Ernie's bar. He was even on the big electric sign outside the bar!

What a great day we've had. Thank you to all the friends and family who met us down at the Odin Store, the individuals and businesses who sponsored the Poker Run, and a special thank you to Randy and Dian Long and ALL the bikers who supported Owen! What a loved little boy we have.


Dex's new pastime is taking out the basket from under the end table, emptying all the children's books, turning it upside down, and......

Yep,...I'm almost there....
Wow! The TV is so much bigger from up here!

King of the mountain