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 someday...it 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.

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 Owen...so 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.

Monkey

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



Sunday Morning Horse Ride

Here's a video of Owen signing "more" for another horse ride. By the time I got my lazy butt up to get the camera to tape him, he had been doing this for probably 20 minutes; the first 50 times he was CRACKING up hysterically. He's still pretty darn happy here though. He's had a good week!

Hyper Hiatus and a New Friend

In the last month, Owen has both switched acupuncturists and began a new medication. The acupuncturist in Lawrence was entirely too far away, and since I am going to start watching my niece and nephew (Ryann and Alden) beginning when school starts next month, I needed to find someone closer. (A BIG THANK YOU TO THE HABIGERS FOR YOUR WONDERFUL HOSPITALITY THESE LAST FEW MONTHS!!!!) We now see Rhonda Bathurst in Abilene. The first appointment was a total disaster. I thought I could take Dex and Owen by myself, and to make a long story short, Owen was overwhelmed by the drastic increase in needles inserted in his little 3-year-old body (35 needles plus!), and Dex was just a hot mess that wouldn't cooperate AT ALL. Since the first appointment, fortunately, Owen has gotten comfortable with the difference in treatments, and Dex is no longer invited to the appointments.:)

On another note, Owen started taking Depakote about four weeks ago. It has been going well. The seizures have decreased slightly in number (still not where we want them though), and his energy level has been great. Three days ago, I called (like the dr. instructed me to) to increase the Depakote dosage to hopefully decrease the seizure activity even more. Oh my goodness. The night after his first dose increase, Owen was awake from 1 am to 7 am. He didn't take a nap the first couple days, which is not like him, especially after acupuncture treatments. He has just been a hyper mess...in a good way for the most part. He has been hysterically laughing out loud probably 8-10 times a day, and smiling more than I can even count. On top of the increased happiness, the kid won't shut up! He babbles constantly...I must say, he's beginning to take after his mom.:) So except for the sleep factor, I can safely say that this kid is feeling pretty good right now. I mentioned in my last post--I think--that we were looking into a medication from overseas. The dr. ok'd this medication, and (after a three week stinkin' vacation) the nurse has started the paperwork to get our hands on it. It comes from France. I talked with the nurse this morning, and of course, the dr. forgot to sign a prescription before he went on his MONTH LONG vacation, so once he gets back, it shouldn't be long before we have it mailed to our front door to try. Let's hope for the best!

One more thing I want to share. I received an email from a lady named Tracy regarding Dravet's Syndrome. She is a parent of a 3-year-old little girl with Dravet's. She lives in Florida but is from Wichita (we are hopefully meeting Tracy and her daughter in the next couple of weeks when they vacation to Wichita!). She came across Owen's blog and we have been communicating via email ever since. I have learned so much from her already. She is apart of a parent support group at a facility in Miami that focuses strictly on Dravet's Syndrome and other closely related seizure-centered genetic disorders. I feel like I now not only have our dr.'s knowledge on our side, but also all of her resources at our hands as well. I will say this. I, without a doubt, know that Owen has Dravet's Syndrome. These two kids have so much in common. To end on a hopeful note, Tracy's little girl--who lost all of her skills when she started having seizures as well--has her seizures under control to one every other week and is now WALKING again and regaining the skills she lost. That's some pretty awesome news and I hope to give you the same kind of news very soon about Owen!

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

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 at....me. 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.