The purpose of this blog is to share photos/videos with our families and friends who live far away. (Facebook is a little too public!) Most of you that follow this blog have been connected in one way or another over the past couple years. You know the intricate details, but for those of you that we’ve lost touch with, here’s a very quick summary that hardly does the past two years justice:
On May 17, 2012 Lily had her first seizure. Within two weeks she was diagnosed with Doose Syndrome (http://doosesyndrome.org). We didn’t think it was possible, but we became just like every other parent on this website. We had days of despair, desperation and fear like I can’t explain. On Lily’s worst days she had more seizures than we could count - 100+. We tried several medications and when they all failed we started the ketogenic diet which is a high fat and low carb diet. Lily eats approximately 20g of carbs a day (the average person is around 120+). The diet has worked to control most of Lily’s seizures. She went seizure free for 2 months last summer but we lost control at the end of August. The diet isn’t easy and requires precision on so many levels. And because of that, we haven’t yet gained control back. She doesn’t have daytime seizures but she has one or two at night.
But despite the devastating diagnosis, we've also had days filled with hope and faith like I can’t explain. Our lives are changed and that is the ultimate understatement. We have learned so much about life, love, faith and have a deeper understanding of the keto diet than most dietitians. We have hope that we will gain control over Lily’s seizures. We have one stronger medication and CBD oil (click for an article about this medication) available as options. We are currently weighing the pros/cons of our alternatives. The goal is to gain control which will allow Lily to outgrow this condition. We read about other parents who talk about the “nightmare” that came through their house and now they live happy, normal lives. That WILL be us!
The impact of the past two years is deep. Jason lost a job but found a new job that allows him to better support our family. I had to quit my job but spend my time focused on making our daily lives easier and happier. Lily is in therapy to gain back any ground she missed covering developmentally over the past two years. Annie is our rock and comic relief! One little girl with an amazing little spirit!
We have had amazing support over the past couple years. We have been so moved by the extremes people go to help. I wish I could thank everyone personally, but that would take me the rest of my life. Instead, I work hard to pay it forward whenever I can.
So where does this leave us? We live each day, day by day. We’ve learned to trust God. We work hard every day to give Lily the best care we can. We do our best every day to enjoy the simple things we use to take for granted. We get tears in our eyes watching Lily climb at the playground because there were days that not only wasn’t possible but we also questioned whether it would be again. We do our best every day to enjoy life and each other. We spend a lot of time together because we are much stronger together than we are apart. I value every minute I get with Lily and Annie - even the challenging ones! Life has new meaning. We still have a lot of healing to do - all of us - but we’re making our way out of the woods.
This was the easy part. Now I have to commit to making regular updates! I’m hoping to have time next week to give a run down of 2014 so far. That will include some of the latest pictures and videos of the girls. I’ll give brief updates on Lily’s progress as well.
We’re making our way back one step at a time!!
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