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!

Weekly Update #4...Better Late than Never

Not a whole lot has changed in the last week with Owen, which is why I'm not blogging on my typical Wednesday afternoon. He is still struggling through this "bad period" of seizures and lethargy. Hopefully he will begin having better days soon. He has been falling asleep at school, which Gavin thinks is hilarious and I have no clue why. Whenever I tell Gavin, "Well, Owen fell asleep again at school today," he just chuckles like Owen is being that naughty kid in class getting away with something he shouldn't be doing. Oh, Gavin.

We are still in the process of getting an appointment scheduled with Owen's geneticist . They are backed up at least four months and are COMPLETELY dragging their feet with getting back to me...do you see a theme in my blog posts by any chance? We have a list of pressing questions to ask her now that we basically have a concrete diagnosis, for example:
1) Are the odds of passing it down to a child less due to Gavin only being a silent carrier not displaying any symptoms?
2) Does Dex have the gene mutation? Could he pass it down to his children as well if he's only a silent carrier?
These are the two most important questions we need to thoroughly discuss, among others, along with getting Dex tested for the mutation. We now realize that we probably took a HUGE gamble by having another baby without fully knowing the situation behind Owen's issues. Yes, we did understand the risks going into Dex's pregnancy; however, we ultimately decided that we would rather have another amazing child like Owen than not have any other children at all, even if it would be extremely difficult having two kids with special needs. After losing Halle and then bombarded with the problems Owen was facing, Gavin and I needed to know we could do this bearing a child thing without a hitch; we were consumed with sadness and grief. Now almost three years later, were we ever so lucky to get our little Dex, our little fireball!!! He is just perfect and we are so lucky to have him, and Owen and Halle, as our children, no matter the circumstance.

Weekly Update #3

Well, how do I start...one of the unfortunate characteristics of Owen's condition (so far) that we encounter is what seems like a rollercoaster of good and bad weeks. This sadly enough was one of those bad weeks; not the worst we've gone through, but not the best either. Owen is seemingly getting what his little brother has--gunk with a fever and sore throat. What a "normal" child would experience--the sore throat, coughing, etc.--completely turns Owen's world upside down. He won't eat or drink well, he has more seizures, he is awake at all hours of the night, and cries often as if he is in a great deal of pain. However, the number of seizures is still not exceeding what he was having a couple of months ago, so we're still extremely excited about this improvement. Last but not least, Owen has been on a supplement called carnitine and MCT oil for pretty much a week (these two are supposed to help the ketogenic diet work better); we haven't seen much of a change, but the other factors such as his sore throat and fever he had on Sunday could be playing a role in the lack of change. It also takes a few weeks to completely see what effect the medicine is going to have on Owen's seizures. Until next week....thanks for reading!

Random note: my aunt Geralyn emailed me these pictures of two raffle prizes her mother-in-law personally knitted for Owen's benefit. Awesome!

Owen's Warriors T-Shirts

Here by popular demand!

Now taking orders for 2011 Owen's Warriors t-shirts

Sizes

Adult S, M, L, XL, XXL, XXXL

Youth S, M, L

Toddler 2, 3, 4

Price

$10

Please contact Rachel at

rdm6687@yahoo.com

to order

Deadline to order is

March 17
We will not be selling shirts at the event, you must pre-order

Note: There will also be a small graphic on the back along with the saying "We are not called to see through each other, but to see each other through"