This Sucks

I’m sorry. I’m doing my best to stay positive but this just sucks. I mean, she should’ve had a chance at a full-life and it isn’t fair. I know, ‘life isn’t fair.’ But… Continue reading

Big Brother

  Jack is an amazing big brother. He kisses Lydia every day. He shares his precious blankie with her. If she’s in a different room from us, he goes and checks on her.… Continue reading

In the Pheno-B hole

Lydia’s twice-a-day Topamax dose is not working to control her seizures. She still has about 20 seizures a day. So now her neurologist has added in Phenobarbital. It knocks her out. But she’s… Continue reading

13 Doctors, 3 Hospitals

Lydia has many doctors trying to help her: A general pediatrician for normal baby stuff (1), a pediatric neurologist for controlling seizures (2), a geneticist for figuring out a diagnosis (3), a developmental… Continue reading

New Gear

Lydia has some new gear to help make her life easier and to make us feel like we are able to do something for her. She has a new chair that reclines with… Continue reading