This disease Leah has gives her some pretty horrible days. Here is a day in the life of Leah.
She turns her head to see her brother (which she never did before). Tyler sings to her and she opens her eyes so wide, she moves her arm and gives him smiles.
Leah has a pretty good day. That afternoon she takes a snooze in her new wheelchair (I think she loves her new chair she always falls asleep in it).
Then she wakes up in a bad seizure. At that point she is exhausted and falls asleep again only to wake up to yet another seizure. The night ends with an extra dose of phenobarbital which totally knocks her out and she is done for the day. It makes me sad! I miss her when she spends so much time in her crib asleep because of seizures. I don't want to sounds like a downer. We really focus on the good moments. That smile I got and the connection I saw this Ty and Leah is so special and it gets me through the hard times. It's the only way to keep going. We have to have gratitude for all the small things. I pray doctors can find a treatment.