Original State vs. Current State - Progress

Original
i. Haven would only sleep 3 to 4 hours at most at night – sleep walking every night – violent sleeping – had to sleep on the floor with her and remove all sharp edged furniture. We did shifts and Kris and I got used to this schedule.

ii. Haven asked for food 24 hours a day and would get violent if food not given immediately

iii. Haven talked VERY LOUD no matter what she said. It became normal until we were around other people. They always thought she was yelling at them but she just yelled.

iv. Haven has never had any emotions and never ever cried as a child. She’s also never ever been sick – if this wasn’t here we’d have a child with perfect health.

v. She was very sweet and loving up until age 2 ½ and then her personality switched very quick to extremely mean. I always said she was like her Daddy! :)

Currently (after 3 months of chemo)
i. Haven is sleeping about 7 hours a night. She’s up by 5am every morning (even weekends). But we’ve grown used to this schedule

ii. Still asking for food 24 hours a day – we now tie the fridge and pantry up at night and have a gate trap in the hall, as well as, lock our bedroom door and put a clothes hamper up underneath the handle. She loves to sneak food and will binge while we sleep. This is the steroids.

iii. No longer talks loud during normal conversation – can even whisper now. She still yells at everyone – especially Grandpa B Honey.

iv. She tears up at about anything. She tears up at Meerkat commercials, bunnies in the back yard, my stone dragon that she sleeps with, her new Mousafur (my mom gave me one at age 13 and now Haven has her own). She tears up all the time when she gets over excited.

v. She will randomly snuggle. More with dad than me but I rarely sit for more than 10 minutes at a time. If she asks him – he will stop whatever he’s doing and snuggle. I have too much in my head that keeps me moving around.

vi. Personality is questionable. She’s mean but snuggly and then mean again. You never know when you are going to get yelled at or demanded to do something.

The doctors are happy with the progress but admit there is still a lot of work ahead. The best news is her disease is degenerative and so far some things are turning for good. They didn't think it would but it is.