that I'm terrible at this blogging business. lol  I just never think there's anything worth posting here.  Little tidbits each day just seem better left to Facebook - so if you're looking for more frequent updates, join us on Facebook (link is at the bottom of the homepage). :)

We're seeing an increase in seizure activity again. :(  Drake had three tonic clonic (grand mal) seizures on Labor Day and had another this evening.  Not sure what's causing the sudden increase - we hadn't seen a tonic clonic since March!  We did have some blood work done last week that showed one of his med levels was high...we're doing repeat blood work tomorrow to double check.  If his levels are truly high, it's possible that his body is just not metabolizing that med efficiently anymore, which could be the cause of these sudden seizures.  If that's the case, we'll probably be trying another med change.  Changing meds is always so scary though - we just never know how he's going to react to something new.  We could try the ketogenic diet - but it's such a regimented diet that I don't think we would have success with our crazy schedules right now.  Will look into it more seriously after the first of the year.

Drake also had a speech evaluation yesterday.  As we already knew, they found his receptive and expressive language skills (listening/understanding and speeking) considerably delayed.  He begins weekly speech therapy next week.  So, now I'll be carting him the 33 mile round trip drive three days a week, plus he has "school" one day a week and will begin having early intervention visits every other week in the near future.  Talk about crazy busy schedule!  Good thing he loves to go for rides in the car/on the bus. :)

A quick "about me" update...I just completed a two week, very intensive Certified Nursing Assistant program.  Somehow, despite all we have going on at home and the insane amount of "homework" the course required (about 8 hours of extra work a night, including weekend!), I managed to pull of the highest grade in the class (98%)!  What a wonderful feeling!  Now, I have to find time to take the state test to become state certified and hopefully land a job that's able to provide the scheduling flexibility that I need.  Baby steps.

As many of you have probably already seen on Facebook, we have finally received a diagnosis for Drake.  Genetic testing shows that he has a specific genetic mutation that causes Dravet Syndrome.

Dravet Syndrome is considered a catastrophic form of epilepsy.  He will never outgrow it.  From what is currently known about the syndrome, he will likely never lead a "normal" life.  He will be plagued with seizures and developmental/cognitive delay for life.  There are no "foolproof" treatments for Dravet; Medications typically do not control the seizures -  there is one anticonvulsant not currently FDA approved (can be obtained from overseas to the tune of $1200/month) that has done wonders in many Dravet children, but not all.  With physical, occupational, behavioral, and speech therapies there is hope that he will continue to progress well developmentally, but between the ages of 2 and 4 years, most Dravet children experience mild to severe regression.

Only two years ago, Dravet was thought to affect only about 500 people worldwide.  Since then, it is now believed to affect 1 in 20,000 to 1 in 40,000 people worldwide.  In most cases, the genetic mutation occurs spontaneously - there is no known cause, it just happens.

I'll be attending a three day conference in Connecticut at the end of the month to learn more about Dravet, current treatments and concerns (such as bone health and navigating educational systems and social/government services, etc.) and will hopefully have an opportunity to meet with one of the top three neurologists in the world specializing in Dravet Syndrome for a consultation. 

This diagnosis didn't come as a total surprise to me.  In my quest to figure out everything that has happened with Drake, I found information on Dravet Syndrome and my momma gut told me this is what we were looking at.  But it took several months and receiving several phone calls after our fundraising story aired on Fox from people that have or know of children with Dravet that suggested we should have him tested before I finally picked up the phone, called our neurologist and demanded that the testing be done.

Because epilepsy in general is very poorly funded when it comes to private and government funding, Dravet receives VERY little research funding.  But there is an organization created by parents of children with Dravet that is working to aggressively raise money for the research necessary to find better treatments and possibly a cure.  Because Drake is still so young, there is hope for him.  If the research can be completed, they may find ways to help him and so many other children afflicted by this horrible syndrome.

On September 25th there will be a Dravet walk in Toledo (at Swan Creek Metropark I believe).  I have set up a team for Drake and we sure would love to have some of you join us!    You can join Drake's team or just make a donation here.

Sorry for rambling on so long.  I've had a few questions from individuals, so figured I'd try to just answer as much as possible for everyone in one place. :)  Don't hesitate to ask if you have any other questions.  May give me good ideas of what to ask the neuro's in CT! lol

Thank you so much to all of you for being such a huge support over the last year and a half!

Life has been hectic in the Current household, so I haven't made it on here for updates as often as I would like.  My unemployment has run out, so I am now desperately trying to find a job; something that will help me reach my ultimate career goals of being a pediatric nurse and that is flexible enough to allow me to continue to get Drake to therapy sessions, doctor appointments, etc. (we are a one car family, so if I'm at work, even if DC were home, he wouldn't have a way to get Drake where he needs to be).  It's a lofty goal and I found myself getting nowhere, so next week I start a two week Nursing Assistant course.  Hopefully once I am state tested, I'll have better luck finding employment!

Today was the first day in over a year that we were successful taking Drake out on errands.  We had to make several short trips at retail locations and since he did so well (he usually melts down within 5 minutes of being inside a store of any sort), we decided to push our luck and eat dinner at Wendy's  (eating out has not been possible with him in the last year either).  He didn't really eat, but he sat content at the table - no loud yelling, no tantrums, no throwing food.  An absolute miracle!

Of course, I should have known it was all too good to be true.  We've been struggling more and more each day this week to get him to take his meds.  Tonight the effort ended with Drake and I both covered in chocolate pudding and Depakote and Topamax sprinkles.  I have no idea if he actually consumed any of the meds or not.  But nothing we tried worked to get any additional meds in him.  So he's in bed now, and I'm a nervous nelly watching him on the video monitor like a hawk.  I'll be on the phone to the neurologist first thing in the morning because I'm at a complete loss. 

We've welcomed a foster rescue dog into our home.  We use to foster dogs frequently, but after Drake's hospital stay last year, we decided it was just too much to handle.  But in preparation for a second dog coming into the home, we decided it would be good to try it out again.  It will get everyone (including our family pets) accustomed to having an additional (and much larger) dog in the home in preparation for Drake's service dog.  So we now have a 60lb+ Golden Retriever in our home.  He's a super sweet/mellow guy with severe skin issues. I was really worried about how our little Italian Greyhound would take to him (he tends to be aggressive towards larger dogs), but they've been getting along beautifully.  Yeah!  If anyone is looking for a family pet, Buddy would fit in well in just about any environment; send me a message and I'll put you in contact with the rescue agency! :)

Speaking of Drake's service dog, we are getting so close to raising the necessary funds!  4 Paws is in receipt of $2,655 in honor of Drake.  There was a gift from Parker's Purpose of $1,000 that I plan to forward to 4 Paws in the coming days.  Three Best Buy events have been completed and one more will take place Friday; we're hoping they can squeeze in three or four more before the end of the quarter (mid August).  Each of these events raises $1,000 for Drake's dog.  We also had a successful fundraising event hosted at a local church on July 11th - we're expecting right around $2,000 from that.  Not including the "hopeful" Best Buy events, we've unofficially raised approximately $8,655; an additional $4,345 needed.  We're hoping to make it into the December 4 Paws training class, so the push is really on now.  We could really use your help!  Visit the donation link for information on how you can send a donation to 4 Paws in Drake's honor.  Purchase a 4 Paws for Drake t-shirt or wristband to not only contribute financially, but also help share our mission.  For those that are local, we'll be back at the Perrysburg First Friday's event on August 6th selling the shirts and wristbands.  If you work for Geek Squad/Best Buy contact your Viewpoint organizer to find out how you can help!  I'm also setting up another Max & Erma's fundraising event for early September - watch the events page or our Facebook page for more info.

Thank you to all who support our family!

Finally back to post that promised update on Drake's neurology appointment.

While the news we received wasn't fantastic, it was a pretty good appointment.  It was the first appt that I've really felt heard and a part of the decision making process for Drake's treatment.  So that part is great!

The doc said he's a bit concerned about some of Drake's quirks and about his speech.  The concern is that it could be pointing to something on the autism spectrum.  Specifically he mentioned Asperger's Syndrome.  However, he also said that 3 or 4 years from now we could see a perfectly typical child and wonder what we were ever concerned about.  Here's hoping! 

The results from the Dravet Syndrome testing were not in yet, but we expect to get those results in the next couple of weeks.  If it is Dravet, that could also be the cause of many of the autistic traits we are seeing.

Since we are still seeing break-through seizures, we have a new med plan.  We're weaning off Topomax - this will take about 6 weeks if all goes well - slower if we see an increase in seizures, something that frequently happens when weaning off seizure meds.  We've bumped up the Depakote and are holding steady on Keppra.  If we're still seeing seizures after the Topomax wean and taking Depakote up to maximum levels, then we will take a serious look at trying the Ketogenic Diet.  I'm very intimidated by the diet.  It requires a lot of planning, time (for food prep), and you have to be VERY meticulous about how much food is being consumed (they MUST eat everything on the meal plan - this could be a real challenge with a picky toddler who frequently throws his food on the floor!).  But, we'll try to figure out how to make it work if there's a chance it will be the answer.  There's about a 33% chance of the diet eliminating the seizures - those odds are far greater than any additional meds we could try.  Oh, and before doing the diet, we would also do another video EEG to confirm that what we've been seeing are truly seizures.  Since the seizures he's currently having are not convulsive seizures, it can be very difficult to be sure they are indeed seizures.  He did take a look at a few of our video clips however and seemed to concur that they are indeed seizures.  He called them atypical absence seizures and I was thinking they were complex partial seizures.  I didn't think to ask him to clarify this point...any seizure experts out there able to explain what the difference really is?  I'm pretty sure complex partials usually have a specific origin in the brain while absence seizures are generalized throughout the brain.  But how can you tell the difference when witnessing them?  Drake's seizures often last more than 30 seconds, sometimes these last for an hour or more.  I've never seen any documents stating atypical absence seizures last longer than a few seconds, so I'm very confused.

So anyway, that's where we're at.  We have a new plan and it's once DC and I both feel comfortable with.  It's the first time since the epilepsy diagnosis that we've had that feeling.  Perhaps that's partly just because the whole thing is becoming so "normal" to us now.

On a lighter note, we got to visit 4 Paws yesterday!  Nine Geek Squad employees volunteered at 4 Paws, working on getting all their computers functioning well enough to get them on-line.  The boys and I thought it was a great excuse for us to go down and visit with the doggies. :)  The GS group spent over 4 hours working on their computers (a few were there for over 6 hours!).  A local Best Buy store even generously donated some equipment needed to improve 4 Paws' network.  And not only did 4 Paws get all this work donated to this great group of folks, but they'll also receive $1,000 donation in honor of Drake from Best Buy!  Such a great program.  There are additional "events" planned - but for most of these, the GS agents will log into the 4 Paws network remotely to continue the work they started on their computers.  DC will drive back down to Xenia for each of these to help facilitate the work (sometimes local operators need to press a few keys or tell the remote agents what's happening with the computer).  Each time the guys/gals do one of these "events," Best Buy will donate an additional $1,000! 

Sadly my camera battery died after taking only one or two pictures.  But I'm working on getting pics from a couple of the other people that were there taking them.  As soon as I do, I'll post them to the blog and on our Facebook page.

Tomorrow is our lunch benefit at Grace Lutheran Church in Elmore Ohio.  Be sure to stop out and say hello if you're in the area!

I'm so upset.  I just typed up a huge blog entry and then something went wonky with weebly.com and I lost the entire thing. :( 

Drake's up from his nap now, so I'll have to return later and attempt to recreate it.

We had a wonderful evening at the Perrysburg First Fridays event.  Met a lot of great people, visited with some old friends, sold many shirts and bracelets, and received several donations.  Thank you to all!