Bye Bye...

This is Hope all wrapped up tight. We try to wrap her arms at her side to stop the seizures from jerking her with so much force. It sometimes calms her down.

We're having a free weekend. As of 6pm today, both girls went for a 'sleep-over' and won't be back till Tuesday. It's a respite weekend for us, and the timing is perfect. Hope's crying has become so overwhelming that I'm unable to make decisions lately (too depressed). It will be good to not worry about how to make her comfortable for a few days. The girls go to a family here in the city who take excellent care of them. They get cuddles and fun hair do's. The husband and wife are both nurses, which puts us at ease in regards to their care.

Alex returned today and we enjoyed some pizza and games with Brodie. Brodie might go for a 'sleep-over' tommorrow night, and leave us with an empty house. Imagine that!?!

The Palliative Care Team was at our house today to discuss options for Hope, and made me feel so much better. So, nice to have someone advocating for us and searching out answers. Hope's crying is definitely related to lack of sleep and seizures. She can't sleep because the seizures get worse when she is sleepy, and then she cries. Such sorrowful sobbing, and stronger cries when the seizures grab her body. The seizures get stronger as the evening progresses and she cries harder. She eventually falls asleep for the night and I think this is why the mornings are good, because she is rested.

As I'm typing this, Brodie has come to me and states that he is going to throw up! Better go...