This blog tracks our family's day to day life while battling our son's diagnosis of Infantile Spasms. Feel free to follow us as we continue to fight against the seizures and devastating effects of this terrifying form of epilepsy. You may also read Austin's full story at the bottom of the page.
Sunday, May 2, 2010
Is it May already?!
Yikes, has it really been that long since my last post? I've been so buried under the day-to-day that I didn't realize it's been over a month.
I have to say...it's been a relief to have had a break though. Freeing myself from the nonstop obsession with IS has helped me. Not that I don't still think about it nearly every minute of every day, but it's different when I'm not swimming in it like I was before. I like the new me. I get more done around the house, I spend more time with Austin, and I'm finding new interests (like being a rockstar in my spare time -a lot of you will know what I'm talking about!)...
Once again though, I have to say...I miss the close contact I had with everyone on here. I thought of little Trevy on his birthday (a date that's permanently stamped into my mind because we are birthday buddies) and wondered how his mommy was handling this momentous milestone. I've had Bennett in my thoughts as well...curious how his new school has been for him. And precious Sophie. Her one year mark since the surgery is fast approaching. What a big girl she is! I've especially thought of Maddie and how she's done post-diet. And big girl sitter Madie...and the sweetheart Colby. All these kiddos have always been on my mind. But, I haven't had the courage to dive back into that. Scared I would get back into old habits of the seizure obsession and disorder comparisons...knowing the fears I've worked so hard to conquer would most likely creep back in to haunt me again. I just couldn't go back there just yet. Trying to keep a safe distance for my family's sake, because I know they prefer me to be here rather than seizure land. Not that checking up on our buddies is a bad thing. But, three of our buddies are seizure free now -which is WONDERFUL! But, that's where my fear comes in. I get scared of never getting there. Comparing and obsessing and despairing and pitying my situation. That was not working for me. I LOVE these kids. I love their parents. I love that they have had the chance to try and start over. I've just needed to live here in my own reality for a while and not compare Austin to other kids. And it has helped me celebrate the smaller things he accomplished so much more.
Anyway, on to business...We have seen Austin transform again since the Lamictal wean was complete. Blowing noises are back (he stopped a couple weeks into the start of the med and started back two days after coming off)! Interaction is considerably improved. Smiles, laughs, giggles, toy banging and functioning!! Lots of great new moments around here!
The diet is still going well. My mom and I have a "date" about every other Saturday where we make Austin dinners all day to freeze. It makes this SO much easier. Usually the only meal I will prepare on the spot is breakfast -the others are pre-made. She has been a tremendous help! She knows when I'm starting to wear down and always steps in and helps...whether it's helping prepare food, buying new contraptions to simplify my life (see pic below), or watching him for me for the night so I can relax a bit. I honestly couldn't handle any of this diet or disorder without her.
Last night was the best surprise ever...no noticeable seizures for at least 5 waking hours!! Yeah! And this morning started awesome as well with only 2 seizures in 3 hours.
We will continue to tweak the diet and medication to get even more improvement. My hope is for him to get off the last two meds sometime soon. We saw cognitive AND seizure improvement after the Lamictal wean. And thinking back, the best he's ever done (seizure wise and cognitively) was when he was on the least amount of AEDs. I'd like to see how the diet will work for him without the meds. There are sometimes more improvements in kids once all meds are removed. It's a goal anyway.
So, that's where we are. Finally moving in the right direction!