When I wrote our last posting I was sad and momentarily overwhelmed.
I’m happy to report that the past week and a half has been different, life is slightly easier. Many of the disagreements and problems that were clouding our lives have evaporated, leaving us breathing a little easier.
We are truly fortunate, Lauren is doing relatively well for a baby with Krabbe disease. She looks beautifully healthy, rosy cheeks and a chubby appearance. In fact, when we are out, many people just see a healthy sleeping baby girl. Lauren’s eyes are almost always partially shut, which I think is related to her vision loss, but she doesn’t mind that people think she’s napping.
Although she occasionally chokes a little on her saliva, she actually barely drools and hasn’t needed suctioning. She doesn’t need oxygen yet. She still hears us, and even gives us the occasional smile.
When Lauren is upset, hand holding with mommy can often calm her down.
She loves her daddy – they have a special relationship. She even tries to talk to him sometimes. Her most favourite is nap time with daddy on the weekends!
I want to share a cute video of Lauren laughing at mommy, it’s very subtle but you can see it!