Sunday, July 24, 2011

Sunday Morning Horse Ride

Here's a video of Owen signing "more" for another horse ride. By the time I got my lazy butt up to get the camera to tape him, he had been doing this for probably 20 minutes; the first 50 times he was CRACKING up hysterically. He's still pretty darn happy here though. He's had a good week!

Wednesday, July 20, 2011

Hyper Hiatus and a New Friend

In the last month, Owen has both switched acupuncturists and began a new medication. The acupuncturist in Lawrence was entirely too far away, and since I am going to start watching my niece and nephew (Ryann and Alden) beginning when school starts next month, I needed to find someone closer. (A BIG THANK YOU TO THE HABIGERS FOR YOUR WONDERFUL HOSPITALITY THESE LAST FEW MONTHS!!!!) We now see Rhonda Bathurst in Abilene. The first appointment was a total disaster. I thought I could take Dex and Owen by myself, and to make a long story short, Owen was overwhelmed by the drastic increase in needles inserted in his little 3-year-old body (35 needles plus!), and Dex was just a hot mess that wouldn't cooperate AT ALL. Since the first appointment, fortunately, Owen has gotten comfortable with the difference in treatments, and Dex is no longer invited to the appointments.:)

On another note, Owen started taking Depakote about four weeks ago. It has been going well. The seizures have decreased slightly in number (still not where we want them though), and his energy level has been great. Three days ago, I called (like the dr. instructed me to) to increase the Depakote dosage to hopefully decrease the seizure activity even more. Oh my goodness. The night after his first dose increase, Owen was awake from 1 am to 7 am. He didn't take a nap the first couple days, which is not like him, especially after acupuncture treatments. He has just been a hyper a good way for the most part. He has been hysterically laughing out loud probably 8-10 times a day, and smiling more than I can even count. On top of the increased happiness, the kid won't shut up! He babbles constantly...I must say, he's beginning to take after his mom.:) So except for the sleep factor, I can safely say that this kid is feeling pretty good right now. I mentioned in my last post--I think--that we were looking into a medication from overseas. The dr. ok'd this medication, and (after a three week stinkin' vacation) the nurse has started the paperwork to get our hands on it. It comes from France. I talked with the nurse this morning, and of course, the dr. forgot to sign a prescription before he went on his MONTH LONG vacation, so once he gets back, it shouldn't be long before we have it mailed to our front door to try. Let's hope for the best!

One more thing I want to share. I received an email from a lady named Tracy regarding Dravet's Syndrome. She is a parent of a 3-year-old little girl with Dravet's. She lives in Florida but is from Wichita (we are hopefully meeting Tracy and her daughter in the next couple of weeks when they vacation to Wichita!). She came across Owen's blog and we have been communicating via email ever since. I have learned so much from her already. She is apart of a parent support group at a facility in Miami that focuses strictly on Dravet's Syndrome and other closely related seizure-centered genetic disorders. I feel like I now not only have our dr.'s knowledge on our side, but also all of her resources at our hands as well. I will say this. I, without a doubt, know that Owen has Dravet's Syndrome. These two kids have so much in common. To end on a hopeful note, Tracy's little girl--who lost all of her skills when she started having seizures as well--has her seizures under control to one every other week and is now WALKING again and regaining the skills she lost. That's some pretty awesome news and I hope to give you the same kind of news very soon about Owen!