Owen's New Fairy Godmother

Before I begin, I feel obligated to insert the disclaimer that this is a "everything happens for a reason" type story. Can I just quickly vent about that phrase for a minute please??? I HATE IT. And it's not that I don't believe it, I just hate it...mainly because I have heard it a GAZILLION times throughout the last 8 years. What mom wants to EVER believe that your daughter was taken from you at birth "for a reason," or your son may never walk, talk, or stop seizing his entire life "for a reason," or that your son will never remember life before Type I diabetes "for a reason"???? It's just a difficult phrase to digest. End of rant.

So a week or two ago, Gavin called me from a side job he is working on outside of Ellinwood. He told me the daughter approached him inquiring about his wife and what I knew about medical cannabis. He gave her my number and that was that. She called, this spunky, blonde 23-year-old fireball, Haley. Within an hour or two of calling me she was at my front door and we began discussing Owen and his journey. This was the start of an unexpected, dominating duo. Since we first met a little over a week ago, Haley has tackled the following: created Owen's FB page; connected me with an extremely helpful legislator who advises me on everything from SB9 wording to what counts as appropriate attire for political events; put together flyers, stickers, brochures, and T-shirts for Owen's cause; attended an event with Lt. Gov. Colyer with me; and contacted many AWESOME, helpful, empathetic, giving individuals including but not limited to her parents Chris and Vicky and Todd their business partner. These people have taken me in and genuinely want the best for Owen. This is one of the many gifts that Owen gives to us,....we get to see the BEST in everyone. This kid is such an awesome blessing.

The creepiest part of all this? Haley wouldn't have found me if Gavin wasn't working on her parents' house. Gavin wouldn't have taken the side job if we weren't strapped for cash and back to a one-income family. We wouldn't be a one-income family right now if Blake didn't get diabetes. And I wouldn't be a stay-at-home mom who endlessly gets to fight for the medicine my son desperately needs to try. Crazy how things happen for a reason.....:)

Without further ado, meet Haley, the boys' new honorary aunt aka Owen's campaign manager!!!

THANK YOU FOR ALL YOUR HELP HALEY, YOU'RE AWESOME!!!

Go Chiefs!...and Wildcats!

Football season is here! Which is pretty much the only reason I get excited for this time of year....new school year (no thanks), hunting season (blah), snow (please stay away), spending an hour putting socks, coats, shoes on little kids (annoying). GO CHIEFS!!!!!

Lucky Number Seven

Owen turned 7 last week. Hopefully this year will hold up to its lucky reputation and give this little boy something to cheer about! Owen had a great birthday full of people he loves the most in the world. Even though Owen has had a pretty rough go with Dravet Syndrome, he won the family and friends lottery....he's very lucky to have so many awesome people in his corner!

Big-time 1st Grader

 

Time please stop. Owen started first grade and he's pushing 50 lbs. The reality is setting in....we won't be able to just pick him up and carry him wherever we go forever. He's becoming such a handsome, sweet young man and isn't so much a cute little boy anymore. Insert sad face.

Dr. Seeley, Owen's New Neuro

I took Owen on a one-day, whirlwind trip to KC. We were there for a whopping four hours. We met Dr. Seeley, Owen's new neurologist. I wasn't expecting much from the appointment, other than sharing Owen's medical history with him and discussing a game plan for the next few months. I got a really good vibe from him. He listened to me and respected my opinion. He is open to the possibility of trying medical cannabis in the future. We, together, decided to try topamax for a second time to try to help decrease Owen's seizure activity. Since Owen has tried every possible pharmaceutical medication he would prescribe, we concluded that trying one we haven't tried since Owen was two years old might be an appropriate next step.

So far, the topamax is not working well. However, I need to give it a couple weeks. It seems to be making him extremely constipated again, and his seizure activity is elevated. It's difficult to be patient with these medications!

The End of Dr. A

Owen had his last appointment with the neurologist he has been seeing since he was two. We will call him Dr. A.😉 This has been a long time coming. He didn't treat Owen like an individual, let alone an individual he cared about. Every appointment was like starting over again; he could never remember what we discussed. He was also extremely arrogant; he once told Gavin and I that he was number one in ketogenic diet research and this doctor we were seeing at Johns Hopkins was number two (WHAT?!) Lastly (among many other problems I won't get into), he didn't value my opinion as Owen's mother. I see him every day and have that thing called "mother's intuition," but my comments went in one ear and out the other with that guy.

So, during Owen's last appointment with Dr. A, he introduced two options for Owen to try. He informed us that these are end of the road medications and are not what we would initially try; however, since we are getting a little desperate, these are our two options. Option #1: felbamate--Owen would have to get his liver and blood checked every other week because this medication is so potent it could kill him. Option #2: can't remember the name, but it was almost certainly going to cause him to lose his peripheral vision permanently. Yep, those were our options. I know, horrible. We opted for choice #1, reluctantly.

It was awful. Owen was on felbamate for a week and a half. His seizures went crazy, he was out of it, he began running a fever. I was freaking out for lack of a better phrase. I took him to get his liver and blood checked; luckily, those results were normal. Needless to say, felbamate is not Owen's "drug of choice."

New Year, New Doctor

It's been awhile since I've posted an update about Owen. He actually did pretty well this summer. He stayed healthy, and fortunately the weather for the most part stayed comfortable enough for him to enjoy outdoor activities.

I have been searching for a new neurologist for Owen for quite some time. We feel it's in Owen's best interest to move on from the dr. he has been seeing since he was two; to sum it up, we feel as if Owen was treated like a number and most importantly, his seizures aren't even remotely controlled at the present time. At our last appointment with this doctor, he mentioned that since we are getting down to the "end of the road as far as seizure treatments," we have two riskier medication options. The first option involves liver and blood checks every other week because liver failure and death are possibilities. The second option "offers" an almost certain, eventual, permanent loss of peripheral vision. Though this was a seemingly impossible choice to make, we opted to try the first option, felbatol. Well, this trial lasted a little less than two weeks. We couldn't do it. Owen was acting off, the seizures went nowhere and he soon after got a fever. We weaned him off and never looked back. We did take him in for the liver and blood check; the results were all normal, phew!

Owen is seeing a new doctor next week, Dr. Seeley from Menorah Medical Center in Overland Park. I have my list of questions ready and am hoping this doctor can get somewhere with this seizures.

Currently, Owen is only taking two medications for his epilepsy (he was taking four, and a total of 12 pills a day). I feel we are at a crossroads; we are forced to choose from two horrible options....having our happy Owen here with us but seeing more seizures, or seeing a lethargic, half here Owen with a few less seizures a day. We are, for now, choosing to see our happy, wide-eyed, sweet, awake Owen. 

Switching gears, while Owen and I went to his doctor about a month ago, we got to catch a Royals game with the Clark's. Owen and I sat right above the KC bullpen. There were people always passing by, yelling at the players to throw them a ball....some were just straight up begging. I was halfway paying attention to the game while talking to another mom about seizures, and Coach Eiland points Owen and I out. He threw a ball up just for Owen. Out of all the little boys beside us, screaming for a ball, he picked Owen. It was a pretty cool, definitely memorable moment.