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.

Mini-Van Madness

It's been awhile since I've put a post on here (obviously). These weekly trips for acupuncture are making it difficult for me to find the time to update everyone. But, here I am, and I am happy to say that Owen is doing pretty well. His seizures have been either the same or better since we started weining him off the diet--what--9 weeks ago? He had two really bad days right after going down on his ratio, but according to his dietitian, that is completely normal. Phew! I was starting to feel a little, well A LOT, guilty for demanding Owen go off the diet! Thank goodness he's been doing great. The meals are getting tastier with every two weeks that pass. He is getting more fruits and vegetables and less mayo/butter/oil. And Owen is LOVING this change in his meals! He actually SMILES and TALKS during mealtime...and going from vomiting to smiling and talking is nothing short of a miracle in my eyes. I have in the past month or so made a shocking realization that could potentially help solve this puzzle of Owen's seizures....or at least make them a little better. POOP. Yeah, that's right. Poop. There is a very strong connection with Owen's seizures and his BM's. For example, he pooped three times on Monday...only had TWO seizures at school on Tuesday (that is an amazingly low number as they are usually 7-10). Since this breakthrough of mine, we have made it a priority to make Owen poop every single day (I might add with the price of Miralax and suppositories these days, this every day obstacle is rather expensive. But thanks to all you Warriors out there constantly stocking our shelves with these products is not a financial struggle! Still reeling from that fundraiser by the way!). Ok,...I don't think I can talk about poop for one more second.

Now, onto another note. It's official. We have found a wheelchair-accessible van for Owen. This van in particular that we are getting was sold to another couple, and lucky for us, their financing didn't get approved. We have been online shopping and comparing for months, and have recently visited United Access in Lenexa to get educated about the bells and whistles of a conversion van. The first time we went and looked, we wheeled Owen up into a van they had on the lot, and he smiled with excitement. I'm pretty sure he's ready to get out of that stinkin' Camry! Gavin and I wanted to wait as long as we could before we took the plunge and bought a van. However, Owen WILL NOT sleep in his car seat in the Camry. All these acupuncture trips to Lawrence have clearly taken a toll on him, therefore, we are ready to buy the van simply for the fact that Owen can lie back in his chair and take a nap reclined. We will hopefully be picking up the van next week....we are so excited we can hardly stand it!!!

Sorry for the big HOLD sign...but you get the idea. It's a 2009 Dodge Caravan (a little fun fact about conversion vans..if you want any kind of warranty on a ramp, you must buy a van and/or ramp that is no more than 3 years old). The door and the ramp open and unfold BY THE PUSH OF A BUTTON....ugh, it's amazing and I can't wait.

Busy-ness

Packing, making meals, unpacking, packing, making meals, unpacking...I feel like this is all I'm doing these days. We have been going to Lawrence going on four weeks straight now, and I can tell the boys (and myself) are feeling the car-lag. As for the acupuncture treatments, I had a lapse in confidence a few days ago, but I think I'm feeling better about continuing them for at least another month or two. Owen wasn't eating or pooping as well as he had been the first couple of weeks, and I was afraid his body and mind was reacting in the same manner it did with all the meds...he would have a honeymoon period where his issues improved, but then after a couple of weeks they would return again. Well, after the third round of treatments, Owen was back to eating and pooping better again; I think it's just one of those situations where he'll get worse as the week goes on, until he can have another round of treatments again. On a good note, about two weeks ago, I was feeding him and talking with Gavin on the phone. Out of nowhere, Owen said, "mama", as clear as day. It was so clear that Gavin could even hear it on the other end of the phone. That moment was just the greatest, and I hope we have more to come.

I know I've talked a lot about eating and pooping with the acupuncture treatments (trust me, more than I would like to talk about eating and pooping...well, mostly pooping), but I haven't mentioned a whole lot about seizure control. That's because we're in a tough place right now with the seizures. They have presently gotten worse, and it scares us to think that the diet has anything to do with it. For the last 7 months or so, we were adament that the diet was not helping him. But now that he's on a lower ratio and he's slowly getting off the diet, he's beginning to have a slightly elevated frequency of seizures, and we don't know what to do about it. Gavin and I are still plotting our next move. Hopefully the increase in seizures is because of something like allergies or fatigue.

These pictures really have nothing to do with this blog post....I just wanted to put two updated pictures of both Dex (10 whopping months old) and Owen up so everyone could see how big they're getting....and so everyone could see what a freakishly weird tongue Dex has.

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!!!