Much has happened since mid-July. We’ve had a mixture of good, not so good and horrible since our ONE very positive update. I reread my last update and
wish I could start out by saying that the rest of our summer has remained somewhat blissful, but that would be untrue. Vic (and us) had a good go of few seizures and happiness for about 2-3 solid weeks. And then fairly recently the seizures have crept their way back. This battle we endure seems endless but we remain as hopeful as we can, that Vic will one day not fear getting hit with a multitude of attacks.The past few weeks, especially, we’ve seen a big increase in seizures and have felt the chase of seizures begin, yet again. We hoped that our prayers were heard when we saw the absence of the Lamictal make such an improvement with Victor; hardly any seizures, none of the bad seizures (grand mal or petite mal) and no sound sensitivity issues whatsoever. When we left the hospital, we added Clorazepate to our arsenal, which really seemed to help settle things down. However, we see that the Clorazepate has reached its peak and is now spiraling into a multitude of myoclonic seizures per day. Vic’s sleep has undoubtedly been affected by these attacks, making it
harder for him to fall asleep at
night and sleep well. We’ve all been highly disrupted and frankly, a bit irritable.Two weeks ago Friday, I witnessed more seizures than I could count and Vic, while mostly battling back with smiles, could take no more and broke down in crying fits throughout the day (I, close to doing the same) when he could hardly let himself fall asleep to catch a break. We have since decided, with the help of our neurologist, to stop the Clorazepate and have begun to wean him off. His last dose has been this evening. At this point, we are not talking about replacing this med with another one.
In conjunction with the Clorazepate we’ve attempted three times to
wean Vic off of the Keppra; a med he’s been on since he was 4 months old. Because of various roadblocks, we’ve been able to get him down to a little less than half of what he started at originally. We plan to take him off of this after we stop the Clorazepate. It is our hope that seeing him without seizure meds of any kind 
(whose side effects may be seizures) and continue solely with the Keto Diet will help him the most.About 5 weeks ago we met with an extremely knowledgeable and highly recommended Naturopath who met with us for 3 hours: discussing Vic’s needs in great depth. We have decided to put him on an aggressive dose of supplements and vitamins, which are what his body has been depleted of for so long. The list is long (Biotin, digestive enzyme, multivitamins, fish oil, Taurine and a double dose of melatonin--6mg/night) and takes quite a bit of finesse to organize, but we feel very positive that this is what he needs. We
have also begun a homeopathic remedy that was specially designed for Vic; acting as his conductor, synchronizing his system to what it needs most. Time will tell to see how this remedy may overall improve his being.Throughout all of this chaos, Vic remains very happy and has little to no sound
sensitivity. If a loud sound occurs where it has been quiet, he may get startled and it may lead to a seizure but our lives remain more tolerable of typical environmental sounds than ever before. Thank goodness! Also, Vic is getting much stronger, gaining weight and becoming more and more aware of his environment than ever. All while keeping a smile and sharing a happy giggle.
At this point, I’d like to share some of the positive things that have happened over the summer and in recent weeks. To start, we made it to our regular summer Zoo Tunes activity with the Esler crew and enjoyed a wonderful summer evening with Emmy Lou Harris. Gary’s college roomie came for a visit and we showed him our local Ballard Seafood Fest. A few weeks l
ater, we ventured down near Victor, WA and hung out at our Dear friend’s 2nd home at Harstene Island.Vic finished up at Boyer on August 1st; his last Vision Group. The rest of the summer while not in school, Vic continued with in-home therapy 3 days/week and had his therapy assessment at Little Bit.
His first session on the horse was a huge success; he was quiet throughout the ride and then giggled when he was done. What a relief! He’ll now start riding therapy on Thursday afternoons beginning, Oct 2th. Ride ‘em Cowboy!Early August was the annual Regan BBQ and despite the rain it was great seeing the
gang again. Vic even got a kite from his 3rd or 4th cousin (whichever), Claire. We brought this kite with us when we ventured to Long Beach for our first time to the International Kite Festival. Bernie loved running on the beach and we all loved seeing the cool kites. Unfortunately, the weather got too windy for us to see the Japanese kites but we’ll keep our fingers crossed for next year’s adventure. The day we returned from the Kite Festival,
my parents came up from Reno. They stayed for several days and helped us with various home projects and local ventures. They were able to attend the first in-house auction at Starbucks; organized by Gary and his team which successfully raised $7,000 for Little Bit Riding Center. They kicked butt at their first fundraising effort! Great job everyone!
Already 2 weeks ago, I successfully surprised Gary. Knowing he had b-day tickets to the Mariners/Yankees game, Gary thought he was going with his friend but instead went with his Uncle. Uncle Ed and Aunt Connie flew in from New Jersey to Gary’s surprise. Apparently, they got outta there in the nick of time (just minutes before the airports were closed due to a hurricane). With Gary off to the game with Uncle Ed, Aunt Connie, Vic and I settled in at home while I packed for our trip the next day to Mazama, WA. We all drove up to Mazama for 3 nights stay. Not only did we have gorgeous weather the entire time, it was mostly relaxing and just great to have distant family nearby. We even visited a working farm, where we now get organic meat!
Vic began school this past Monday and is now going to Greenlake Elementary four days/week for 2 1/5 hours. His new class
has 5 other kids, two of which attended Boyer. So far, he seems to enjoy being in a routine again (and so do I). If we can get him to nap when I want him to, life will be all that much better too. That’s all for this update, next time I’ll share more updates of school and definitely more riding photos!
My shared thought :Life is never simple but usually it is the simple things that keep me going!
Please see Summer Photo Gallery in following post, below.
