Calm Amongst the Chaos

I know I am so over due for a post! Short and sweet, Lily is having really bad seizures. She is currently having 2-3 tonic clonics a day lasting over a minimum of a minute long each. She is also having her clusters and drops through out the day. We are still tweaking some things and relying on God and trusting that we are doing the right things.
We had a follow up sleep study to check on her apnea and she went from 10 spells and hour to none! That was a blessing to hear that her awful surgery was a success. Although she still has sleep issues, like it took her 225 minutes to get into REM sleep, the good news is she has no de sats, no apnea and has much healthier sleeping.
I wanted to post tonight to share about an awesome opportunity we had to have Lily enter a 5k! She was the team captain and had a team of “angels” running and pushing her. I didn’t know much about it, but we were offered and I said sure. It was a beautiful night and I took Oli and Lily out a few miles out of town to a beautiful golf course and we met up with My Team Triumph. The race was benefiting Down Syndrome and it was a beautiful evening, the run was called Glow Run because it was dusk and there were candles and glow sticks everywhere. Lily was teamed up with a great group and we cheered for them along the way. What a wonderful experience! Next time I want to be a part of her team and push her!
She did very well the whole race, totally relaxed and happy. Then when it was over she cried. And cried. And cried. They promised her she can do a 10k next time. It reminded me of the time in Sea World she loved a ride so much they just let us go on it over and over again. Our girl loves wind in her face.
It was an awesome experience and it was even cooler to hear one of the “angel” runners when being thanked by a parent, he said “my pleasure, it was a blessing to be a part of this”. How awesome is that?!