Pokey, Pokey

Owen had his first two rounds of Japanese acupuncture last week. Since Japanese acupuncture isn't as common as Chinese acupuncture, we had to drive all the way to Lawrence for this procedure. The acupuncturist we chose is Gina Halsey; she specializes in neurological disorders and seemed to fit the mold of what we wanted. Owen responded with flying colors to the treatments, and he tolerated the needles extremely well, as I knew he would. Although we didn't see a drop in seizures, we saw many other improvements: 1) he can poop on his own! Hopefully no more suppositories every other day!, 2) his energy level was through the roof; I had a hard time telling if he was having a seizure or just moving his body like crazy, 3) awesome eye contact and tracking; he followed his cousin Ashtyn (sorry if I mutilated the spelling Tara) all the way across the dining room, and he laughed and smiled like CRAZY after the treatments, 4) and finally last but definitely not least, a decreased gag reflex; Owen isn't puking during mealtime almost every day anymore! He has lost quite a bit of weight because of the loss in caloric intake over the past few months, so I'm hoping he'll gain this weight back now that he's eating well again. This is all great news to us, but we are hoping in the next few treatments that we see a decrease in seizures as well.

We are so lucky to be able to stay with Gavin's cousins Randy and Tara, and their kids, Peyton, Ashtyn, and Houston. Tara has a stay-at-home daycare (not to mention an AMAZING house!) and has offered to watch Dex while I take Owen to treatments. She was a GREAT help and Dex seemed to love the new environment and all the other kids. We go back (already) on Wednesday and Thursday. Gavin is able to come with us this time, and I am super excited for him to see the process, and especially to have his help! We'll see what this week's treatments bring.

FINALLY...

This post will hopefully be short and sweet. Owen, my sweet little boy, is getting off the diet....finally. Did we have a doctor's appointment you didn't know about? Nope. Gavin and I have had it. We're sick of this doctor putting us off for months. Owen has been either puking his food up, letting it slide out of the sides of his mouth, or not even finishing it for months now. Mealtime is a traumatic, stressful, frustrating time for everyone...and for what?! It's not even decreasing his seizures. I called the doctor first thing Monday morning. I told them--not asked them--that he was getting off  the diet. I feel like such a rebel. On a not-so-positive note, however, it's going to take around 2-3 months to completely take him off the diet and get him onto "real foods." The end is in sight and we couldn't be happier! I just know this is the best thing for Owen and he will be so much happier with his strawberry milk, oatmeal, and bananas.....we absolutely can't wait!!!

The Fundraiser to End All Fundraisers



Owen's cousins, and Dex...don't know how Owen missed these pictures, but I'm guessing he was asleep



Holy cow, I don't even know how to put this into words. The raffle fundraiser that Josh, Alisha, and Rachel headed up was beyond our wildest dreams. It was a weekend full of entertaining basketball games, great food, and hundreds of people cheering on the teams and showing their support for Owen. After it was all over, Gavin and I just sat on the couch speechless. We were just so emotionally, mentally, and physically exhausted from taking in all of the overwhelming support from the probably thousands of people who participated (and we didn't even do any of the work! I can imagine how Alisha, Josh, and Rachel probably feel right now!). Let me just take a few moments to crunch some numbers for you all, just so you can really truly see how amazing this was. There were well over $17,000 worth of tickets in the hopper, and 55 amazing donated prizes to be won. After my trip to the bank yesterday, the estimated overall amount collected was right at $22,000. UNBELIEVABLE. And I'm not done yet; that's not even counting the individuals who sent a random donation to us in the mail in these last few months. The support was UNREAL. Owen is such a lucky boy to have so many people who love him and care about him. This fundraiser hasn't just helped us financially. It has made us want to help other people the way so many have helped us. It has showered us with friendly words and encouragement. And most of all, it has distracted us away from thinking about the negatives and the "what if's" in Owen's future. I think I speak for Gavin too when I say it's still a little too fresh and we're still trying to let everything sink in.

Speaking of Gavin, I'm so proud of him. In case you don't know him very well, he's probably the second most shy person I know (You win that trophy Ryann!). He stood in front of the hundreds of people there for the raffle and thanked everyone for their participation...there were few dry eyes in the place and really all he said was thank you...I think he's found a new career in public speaking. My point: he wanted to thank a few select people but was afraid he would forget someone very important and didn't want to offend anyone. So I'll attempt to do that now, and if I forget someone I guess it's my fault and not his!

ALISHA: Alisha (Gavin's big sis) was the queen bee on this effort. This was her idea (I think she was prompted by the Dreiling girls....thanks to them too!) and she did a great job. She is Owen's godmother and definitely took this role seriously when offering to do this fundraiser for us. She did a good job of keeping most of this from us, but I'm pretty sure she put a ton of hours and work into this raffle. Alisha, thanks so much for this amazing gesture and all of your hard work!

JOSH: Josh is a good friend of ours. He was in charge of the tournament and offered to give the proceeds to Owen. Josh and Alisha worked hand-in-hand on the raffle and collecting and organizing the prizes and raffle tickets. This, obviously, was a TON of work! Josh, thank you for being such a great friend and for all of your hard work on this fundraiser!

RACHEL: Rachel (obviously) is my sister. She headed up a lot of the non-Barton County community and the KC area. She had the great idea of having T-shirts made. It was AMAZING to see everyone wearing their shirts in support of Owen on Sunday....truly AMAZING! She also "prettied up" this blog because she knows how horrible I would have been at it. Rachel, thank you for all the time you put into organizing these things for us!

MANDY STOS: Mandy is an old softball teammate of mine. She offered to set up the paypal account and the blog. Mandy, thank you for getting the online portion of the fundraiser going!

CHRIS KINMAN: Chris offered to create the Owen's Warriors logo, which turned out awesome. He also designed the flyer and did a fantastic job on that as well! Chris, you were a huge help, thank you!

Now is where it gets slightly overwhelming. There were SO many people--I'm talking a completely insane number--who helped sell tickets, bought tickets, donated the AWESOME raffle prizes, sent donations, bought shirts, or simply just sent a nice message. I would be here all night if I thanked each and every person (which is a wonderful problem to have I might add). Gavin and I know who you are (at least we are finding this out as we look through Alisha, Josh, and Rachel's information), and we thank you from the bottom of our heart. We'll be thanking you forever, so I hope you all are ready for that committment!:)




  


TOP CENTER: Oh, Miss Nicki, how Owen loves you! (Miss Nicki is Owen's speech teacher at school)
BOTTOM RIGHT: Papa John and Carly giving Owen some love

 


Let's sum up the top three pictures: 1) Dad losing the screw to his glasses, 2) Me, the one who--an hour later--found it, and 3) Gavin telling inappropriate jokes (Ok, I just made that last one up, but I guarantee you that's what's happening)

 


It's raffle time! Some of Owen's older cousins got to draw a ticket out of the hopper...they all did an awesome job of just picking one!



Grandma and a very tired Owen

Alyx taking time out from playing to pose with Owen...what a great cousin!



Owen and Leyton's "tough boy picture"



I'm pretty sure Owen's begging me to let him take a nap in this picture...it's hard work partying all weekend

Involved in some intellectual conversation with Aunt Geralyn (I wonder who's doing all the talking :))

Owen with our buds Tara and Ryleigh Ball...they came all the way from Wichita to attend Owen's fundraiser!

Owen with his good friend Calyn Baker; Calyn won $100 in the raffle and gave it to Owen. What a nice little girl! Thanks Calyn!

As you can tell by the gazillion pictures, it was an awesome weekend....one we will never forget.

THANK YOU TO EVERYONE FROM THE KLUGS!!!

Weekly Update #5

I'm trying to get back on my Wednesday Weekly Updates, but I'm sure I'll screw it up at least a few hundred more times. Owen's had a pretty good week. And when I say "pretty good," we measure that by two factors: 1) his seizure frequency, and 2) his overall mood and energy level. His seizure frequency hasn't been that great; he's been coming home from school having had 8 or 9 seizures in a three-hour period, and they don't slow down after he's home. However, his mood has been pretty good. He's been sleeping when he's SUPPOSED to be sleeping, and he's been pretty wide-eyed and happy for the most part. Going back to school after almost a two-week break, he's been coming home begging for a nap. Those teachers and therapists of his are great at wearing him out!

Gavin and I have been looking at a supplemental form of treatment for Owen, other than medication and diet. I have been speaking with a wonderful fellow mom named Stacey (we met her in the airport on the way to Baltimore, how lucky were we!). She has a four-year-old son who has a seizure disorder and an undiagnosed condition. They tried what is called hyperbaric treatments (google it, it's pretty interesting stuff)...they are super expensive, insurance does not cover them, and some kiddos see good results and some don't. Stacey's son was seizure free for the entire year of 2010! I would be ecstatic if Owen could be seizure free for a day, let alone a whole year. These treatments would have to be done in KC, and we are still considering them. However, after speaking with Owen's ketogenic diet nurse, we think we might try Japanese acupuncture first. It's less expensive, it has more "scientific proof" that it works for some people(according to the nurse), and we know there are no risks to Owen's safety or health (to my knowledge, there are no risks doing the hyperbaric treatments either). It has been said to not only decrease the frequency of seizures, but also help with GI/digestive issues and sensory issues as well. Now I am just in the process of finding a Japanese acupuncturist that doesn't live HOURS away!!! I don't think it's going to happen though. So far Great Bend, Hoisington, and Salina only have Chinese acupuncturists. Yeah, there's a slight difference I guess. I need to do more checking and more research, but I'll hopefully have some more information in a few weeks.

Until next time...

Diagnosis Schmiagnosis

Gavin and I are thoroughly confused. Denver doctor says, "I think Owen has Dravet's Syndrome." Baltimore doctor says, "I think Owen has Dravet's Syndrome." Kansas City doctor says, "Well, I do think Owen's issues are caused by the SCN1A gene mutation. But. There is a wide spectrum of syndromes that fall under this gene mutation. I don't think he is as bad off as Dravet's, but he is not on the mild end either. So I think he falls somewhere in between." Hmmm. Soooo....what exactly do you call that "in between" syndrome anyways? We have been telling everyone that Owen has Dravet's Syndrome because 2 out of the 3 doctors seemed pretty sure that's what it is. Now, I guess, we just need to wait to see what the geneticist thinks; she will be our tiebreaker and final answer, I hope. AND....after WEEKS of trying to get Owen in to see his geneticist, and after multiple failed attempts over the phone, he finally has an appointment June 13th!!! (The great news about that date? We'll already be in KC that weekend for my friend Jamie's wedding! Yay extended weekend!) Stay tuned to hopefully get a more "official" diagnosis for our boy!

Dr. Abdelmoity (Owen's epileptologist/neurologist) also told us about a study he and some other colleagues of his are doing soon. It is in the approval stages, but it will be approved (so he says) and he wants Owen to be a part of it. He is taking a handful of his patients and researching their entire genomes...or what humans know to be the entire genome anyways. I have mixed feelings about this. On one hand, it has to involve a LOT of blood work, and we all know Owen doesn't need anymore of  that. I'm also anticipating a lot of road trips to KC for this, which won't happen I can tell you that right now. On the other hand, what if he finds something we've been looking for all this time? What if this will lead us to THE exact diagnosis? Or more importantly, a better way to medically treat him? I don't know; we'll see what happens I guess. For now, we're just weighing the pros and cons until he talks with us in depth about the study in the next couple of months.

Smiles, Smiles Everywhere

This was Owen's reaction after not seeing me all day long (I had to take Dex to the doctor in Salina)....










And Dex turned 9 months old yesterday....his next well check will be on his FIRST BIRTHDAY!!! Here's a shout out to Big O's best bud in the whole world...

Crazy, crazy kids.

Impromptu Trip to KC, St. Paddy's Day, and a Wildcat Win

Dex getting his shamrock; I'm sure he wasn't this still for very long. Owen and I were at his appt. when the kids got their shamrocks. Because of Owen's diet restrictions, he couldn't have gotten one anyways. :(

The whole gang, green and happy.

I know this is Owen's blog, but COME ON. Can we say, Gavin?!

Boy, did our seemingly uneventful week turn into a big ball of chaotic plans and exhaustion in the blink of an eye! I got a phone call from Owen's keto diet nurse Tuesday afternoon, wanting us to come in for an appt. Thursday morning. What does that mean? We had to leave the next day for KC. What else does that mean? Gavin had to work, so it was just the boys and I this time...our first trip without dad. :( Now, to any regular Joe, taking two kids to KC isn't a big deal. Oh, but it is. You'd be surprised the silly, normally irrevelant situations that I obsess over. Like.....I can't just stop and go to the bathroom. I can't leave the kids in the car by themselves for two minutes while I go tinkle. Or....how I get that huge, awkward-shaped 40 lb. wheelchair into the trunk of my Camry all by myself when Gavin ALWAYS does it. Well, I learned a very important lesson during this lightning-fast trip to KC. Gavin is irreplaceable and I'm never scheduling an appt. on his work day ever again. On top of the normal anxiety of a trip by myself, both kids were battling congestion. And I'm not talking a little snot and a little cough. I'm talking Pukesville U.S.A. I'm pretty sure I (with Rachel and Kev's help) cleaned up five or six puke sessions in the short time we were visiting. This happens often with Owen; he gets so much mucus built up in the back of his throat that when he tries to eat, he chokes himself, and it all comes back out. (Yuck, yuck, and more yuck I might add)
So what did we learn from Owen's appointment? Well, first of all, this appointment was a check-up to discuss our next step and the status of the diet. Let me brief you on how the last five months plus have gone. I go into the appointment with this "No-holds-barred, bad a**" attitude that I'm not taking no for an answer and this is the day that Owen DEFINITELY is getting off the diet this time. Seriously, I pump myself up before each appointment. Then, the dr. will give me some excuse as to why now's not the time to get off the diet, even though during the previous appointment, he told me we would try ONE MORE THING and then get off the diet if it didn't work. And the cycle continues....he shut me down AGAIN. SO, Owen has started a new medication called Zonogran, and is staying on the ketogenic diet. Grrrrr. That was my attempt to put frustration into writing if you couldn't tell. So exactly WHY am I this anti-diet you ask? Owen has been on this ketogenic diet since May 1st (yes, I remember the exact day...it was an eternity ago). The staples of the diet are: chicken/tuna/beef/ham/eggs, butter/mayo/oil, water/crystal light, and a splash of vegetable/fruit and heavy whipping cream. No milk. No oatmeal. No cake. Not even bananas. And on top of this very specific menu, I have to measure out every single ingredient to the gram on a food scale. Every meal. Every ingredient. No snacks. No birthday cake. Not to mention Owen chokes down every meal he eats...it's horrible and he does not deserve this abuse. Finally, it doesn't even seem to be worth it for his seizures. He still has around the same number he did when we started. This dr. of Owen's seems to have a way of twisting my words around, and at the end of the conversation, he truly believes the diet is helping. Hmmm. I don't know how in the world he does it, but I always walk out of that doctor's office feeling defeated.
On top of continuing the diet, Owen had to get his blood taken (like always) to check his levels. We did this the evening before to get it over with because we've had HORRIBLE experiences in the past. Well, to make a long story short, the tests came back wacko, so he had to get stuck AGAIN. Yep, the tests were wrong, and the second time around they were accurate. Once again, I'm a little exhausted with people not doing their jobs right the first time. But Owen was a trooper, and that's all that matters I guess.
To end on a positive note, the boys and I got to spend some QT with their super cool cousins, Max, Adrienne, and Kendall. We went to Union Station to partake in the St. Paddy's Day festivities, where Dex got a killer shamrock painted on his cheek (that looked like a smeared dirt spot by the time Owen and I met up with them after the appointment). Rachel snapped some cute pictures and we all had a good time...St. Patrick's Day AND and a Wildcat win? Who could ask for a better trip!