Greetings from NC.
We're still here, and doing well.
Actually, I'm sick! Sick of being here (away from home), sick of getting into an oxygen chamber twice a day for 3 hours (it's hot and boring), sick of encephalitis and brain damage (and what it's done to my baby girl), sick of fighting for recovery, sick of spending all hours of the day on Suzy (her therapies, doctors, appointments, treatments, issues, and care), and sick of feeling like I am losing my mind.
And I'm tired! I haven't gotten a good night sleep in 14 months. Suzy is still up for hours each night. It's cruel - to care for a handicapped child all day when you can't get some decent rest all night.
So, I am SICK and TIRED!!! Aren't you glad you checked in on us?
The good news is that Suzy is doing great. She is handling the treatments beautifully. She has also made 2 nice improvements over the past 2 weeks:
1. She is responding happily to toys and books. She will smile at the story and actually LOOK at the pictures in the book! She also has a few favorite toys now. TOYS (not just PEOPLE) make her laugh! This is such a good cognitive step.
2. She can drink from a big girl glass. When she sees me or Nana drink soda or coffee, she gets all excited, and opens her mouth, saying that she wants a sip. So, we started giving her sips. And now she can gulp down milk and juice like a big girl.
So, we are proud. And I realize that even though I am sick and tired, it is all worth it. The travel, the cost, and the energy for all of the treatments are slowly paying off. For this - we are grateful!
And the other great news is that MY OTHER 2 WONDERFUL CHILDREN will be in NC with me tonight! I have missed them so much.