This week we took Lily for a 24 hour EEG. I think it’s God’s sense of humor, but it was the same room where this journey BEGAN back in May of 2012. Where her first EEG results and Doose diagnosis were delivered. Yesterday she was hooked up to 20+ wires, bandaged, then sent home with a little backpack with a computer in it that recorded her brain activity.
And oh, was Lily Lily. In her pigtail braids with a perma-smile and love for life. No complaints… just smiles and dancing! We went in today to have them taken off. Then we waited for results.
And because our doctor is amazingly fast at getting back to us, we received this email at 4pm today:
Dear Ms. Clapper
The official report will be dictated tomorrow but looking through the EEG preliminary: there were no seizures at all. The pushbutton events of odd eye rubbing are not seizures. The background itself is much improved from before and I can't see any spike discharges (which are waveforms suggesting a potential to seize). However, I looked at it briefly so the official doctor who is reading it will dictate it and will likely not have a formal report out until tomorrow.
If there is anything different in the formal report, I will email you back. If you don't hear from me, it means that the recording is normal (which is a great thing)
The emotions are overwhelming to say the least. Two and half years of fighting every day. So many failed pharmaceuticals. Two years of the daily struggle of the diet. Two and a half years of daily seizures - so many we can’t count. Years of anxiety, stress, fear, darkness, anger, desperation and despair. I can’t say for sure it’s over, but IT IS ENDING!
What’s working? CBD (aka Charlotte’s Web)
We told Lily the good news and how proud we are of her. Her response - giggles followed by “no, you’re not proud of me!” And more giggles! We’re working on Annie. She’s a little younger, so it typically takes a little longer for her to understand. But she has goodness coming from all this too!
Ahhh… so a new beginning. Healing. For Lily that means we can continue to wean her pharmaceuticals until she’s completely off. We can continue to work on catching her up developmentally and physically - and see progress. We can resume some more “normal” parenting. For us that means putting some of the worry to rest. It means we can focus on something further out than today. For us that means healing too!
I’m overjoyed. I’m excited for what’s coming. I’m happy. I appreciate life. I appreciate the love Jason, Lily, Annie and I have for each other. I appreciate our love for God and more importantly, His love for us. I’m walking around with a lump in my throat. There’s a part of me that is still in disbelief. But, I’m not sure if it’s just the impact of the past couple days or the impact of the past few years, but the most overwhelming feeling is that of utter exhaustion. I feel like I just ran a marathon. I’m tired.
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