Embracing life

To say that it has been a stressful week would be the ultimate understatement. It’s been rough. Pepper’s birthday came and went with small fanfare. We celebrated together with our families as she fell asleep in her highchair, too sick to worry about the goings-on of her older rowdy cousins. She is now one year old, and one bad cold virus wiser. Happy Birthday to our beautiful Peanut. 

Monday was my first day back at work, which was ok for me since daddy stayed home with our sick little trooper. She was still feverish and not entirely herself, so it was safest to have her home and lovingly watched by dad. I still worried, but not as much. Tuesday however, was a big day. Sick Kids! It was time for our follow-up appointment with her neurologist. We arrived there prior to our appointment for her EEG. Unfortunately, our little girl decided she wanted to sleep on the way into the city and not during her EEG which is what she was supposed to be doing. Nonetheless, her EEG did not show seizure activity as it had months earlier. When it came time to meet with the neurologist, I was anxious for what she had to say. And rightfully so. It turns out that the genetics tests that were done, were quite general in nature and did not reveal anything about Pepper. Further investigation is necessary. Oh joy, more waiting. But hold on… *taking a deep breath as I type this* The doctor would like to test Pepper for a condition called “Dravet’s Syndrome”. So named for the French neurologist who discovered it. I caution you, before you go Googling Dravet’s Syndrome. It’s grim. It’s scary. It made me lose my appetite, cry my eyes out, not want to talk to anyone, not want to continue with this blog, and basically, just to crawl under a bridge and hide. No, it’s not a diagnosis. It’s a question mark that we all need answered. So, Pepper’s DNA is taking a trip to a lab in Germany to get tested for this very scary disorder. We will not know the results until potentially February when our next appointment is. Yes, I said February. Four months from now is the earliest follow-up appointment we can get. In the meantime, we are being referred for assessment with the therapists at Sick Kids. Pepper is slightly delayed with some of her milestones. It appears therapy is in our near future. 

So how did the rest of the week go, you ask? Huh. Well, with potentially devastating news like this, with having to return to work the following day, with having to drop off our much loved child to daycare, and not be able to just hold her all day and cry, it was pretty awful. We both could not concentrate. But our little princess, how did she do? She was happy, she napped well, she ate well, and she had a great time at daycare. She was oblivious to the fact that kilometres away, we were worrying about her and wanting to hold her in our arms. She has since had a couple more successful, seizure-free days at daycare. By all reports, she is a normal 1 year old, exploring the bleached down floors of the colourful room at her daycare. It has been 101 days since our world has been turned upside down. There have been 131 times our hearts stopped as we watched our sweet girl seize. It has been almost one week since her last seizure. “Getting strong today…. A giant step each day….”