Has it really been that long since I posted something decent?
It's just a testament to how darn crazy things have been around here.
Bringing Slugger home truly was like bringing another baby into our family. A very long-haired baby. He still does some puppy things, like eating cheeseburgers if they are left unattended and chewing every toy in sight. Just yesterday I wrestled a small plastic dog, two marbles and a little red ball from his jaws. The dog and ball are no more...thank goodness he didn't shred the marbles. Yes, he has appropriate chew toys, he just wants to share the love I guess. It's more like having a brand-new toddler than an infant. I still have to feed him, clean up after him, bathe him, brush him, etc. However, he is mobile, so we have to "baby proof" the entire house. He has tried to get away with things, like any good self-respecting toddler, and needs reminding of the rules. It has been a major headache trying to weed through the nurses and figure out who will make a good handler for Slugger. Looks like I am going to have to start from square one again with some of my shifts. Others, have handled it beautifully. Still, without Slugger we would never have had the opportunity to do the things we have done in the last month. The only thing that has changed is bringing him home...and it has changed our world.
After a year and a half of trying to potty train Cole with every method imaginable-he has finally got it. Was it his teachers, treats, peers, daddy? Nope, it was Slugger.
His language has improved and he is all around more content. He has actually slept in his own bed throughout the night without another adult next to him for the first time in over 2 years. We're still working on it happening every night, but hey-MAJOR improvement. Knowing Slugger is on his bed has helped him to go back to sleep when he inevitably wakes up in the night. We were going to start Clobazam (does this sound familiar), but something told me to wait. So glad I waited...again. Cole has been sick twice since we brought Slugger home, each time for about a week. What can I say, pre-school is a germ factory :) Adding a new med while sick doesn't give you a great idea of how it works.
This time last year, the g-tube was fresh. It has saved my butt more times than I can count. We were still on full fledged keto. So grateful that we are done with that. We didn't go ANYWHERE. Even going to our neighbors for a couple of hours was a huge undertaking. Cole hated Christmas. He ran away and couldn't handle the overstimulation that came with any celebration. We spent the majority of any get-together, no matter how big or small, in another room. This year was completely different.We embarked on a vacation bigger than anything that we have ever attempted before with Cole. It included 6+ hours on an airplane (twice), up to 7 hours at a time in a car and never being in the same place for more than 2 days. Oh, and did I forget to mention that we visited Disneyland? Yep. The nightmare of all overstimulation.
Cole was fine.
You heard me.
In fact, he has gone over three weeks without needing rescue meds to stop a seizure. He has not gone that long since 2009. Our previous record was 17 days.
The only thing that has changed recently is Slugger. No magic med, no intense therapy, no special adjunct anything. Just a dog. A very special, expensive, totally worth it dog. We knew that there was a possibility of a decrease in seizure activity when we first got Slugger. We didn't hang our hats on it though, all kids are different. We are religious people, we believe in angels and prayer and know that we have had help from so many people to get where we are today.We know that Cole is going to continue to have bad times. 'Tis the nature of the beast. Dravet has taught us that we can never get comfortable, because things are always changing. However, the timing of this "good spell" has been fantastic. Cole still doesn't understand the concept of Santa or Christmas. Still can't handle opening presents (it's a myolconic fest). Yet, we had as close to a normal holiday as we ever have. My grandma used to have a sign on her fridge that said, "We don't believe in miracles, we EXPECT them". We have had so many pinch-me moments this holiday. The biggest one I call a miracle, Cole just calls him Sluggie.
Thursday, December 29, 2011
Sunday, December 4, 2011
For those of you who did not get our card this year (don't feel bad, our families are so huge we didn't have any left) this is the photo that we used. It's kind of silly, but that's how we like things around here. Remember Last year's card?
Slugger is our present for Christmas, birthdays, anniversaries etc for the next year (or three) so we decided to wrap him up all pretty!
We WOOF you and yours a very Happy HOWLiday from the four of us and thank you for reading Epilepsy Warriors.
P.S. We got named on this list, along with some of our amazing friend's sites, as being one of the top blogs for epilepsy support.
Photography by Oscaron Photography and the actual card (it was sure cute, red houndstooth backer and all!) was by the one and only Pearenthetical Press.