Don't let these pictures, fool you, it's been a rough couple weeks over here but things are looking up, and I'm finally feeling brave enough to post again. Cassie is responding well to the antibiotic, Metronidazole. She's been taking it orally every six hours round the clock, so safe to say I'm still pretty much a walking zombie- but ok with that. When she was in the hospital I remember walking past her empty crib at home so heartbroken, I'm just glad we are home getting better, not in the hospital getting better! Today is day 14 so we are anxious and hoping that she will still be good when we stop the med tonight. We have pretty much been shut-ins since coming home from the hospital, as we are trying so hard to keep her healthy. It's unnerving to know her immune system is not where we want it, and there are concerns about getting her off and keeping her off antibiotics for a while going forward, so we really don't want anything yucky over here. Her body needs a break from the antibiotics!
She is happier these days and her appetite has come back, as her symptoms seem to be subsiding. Her favorite foods are cheese, chicken nuggets, and chocolate milk. I give her dozens of snacks a day- pretty much whatever she wants, whenever she wants. A funny thing- the other day she picked up the phone and started babbling away, ordering chicken nuggets and such, just like hospital room service. We ordered a lot of meals that way- and she never really ate any of them...man they charged a lot for that food.
Our PT/OT visits have been less frequent because of her illness, but we have had it a few times and are looking forward to continuing. She has been doing awesome with therapy and we are so pleased with her left hand. It's really a miracle the way it's coming back. Her neck needs some strengthening so we are working on that, but she is looking good!
Today she had an EEG to study brain waves, in preparation for our end of month visit with the neurologist. We are hoping to get her taken off the anti-seizure med that she is still taking twice a day.
The visit went much smoother then I anticipated. We were instructed to keep her up 2 hours later then normal last night, and wake her up 2 hours earlier then normal this morning- that was fun! She was so agreeable though and I was really proud of her. She is so so brave. Going back to the hospital is so unsettling for both of us, it's a strange feeling- we lived there for so long, and now just really want to close that door, while at the same time feeling so grateful for the hospital and staff who are now part of our lives.
So they hooked up electrodes all over her head-(I told her they were doing her hair) and taped them all in place. (And sadly I forgot to take a picture!) She lay there quietly while I read lots of stories. Then they wrapped her head with a turbin-looking bandage, turned out the lights, and told us to sleep. I laid with her in the bed and amazingly within minutes she was sleeping! They watched and recorded for about 30 minutes, then came in and flashed strobe-like lights- super annoying- at her while she was still sleeping. It was an interesting process. She woke up and said "I want to go home" and we did! They pulled off the sticky tape-which she hated, and then they gave her 3 blankets and a pillowcase. Seriously. I guess it was a slow day and they felt the need to shower her with donations. She is super cute and she even said "thanks." She was quite pleased. Sorry it's taken so long to be brave, we sure appreciate your love and concern!