Here we go again...

Just last week we were back at Barbara Bush.  We spent 12 hours (again) in the ER waiting for a room to open up upstairs. Cady had an episode triggered by a fever of °103 that came on suddenly and hit her hard. Her emergency dose of Diazepam didn't work and we wound up there for three nights while they tried to find the cause of her fever. It wasn't until the morning of the last day that the docs found signs of an ear infection. She had tubes put in both ears about a year ago due to a ridiculously high amount of ear infections the year before. They put her on Amoxcillin. 

9/4/2017

This and the previous episode last September that landed her in the hospital have taken their toll on us all. Most of all, Cady. She is not only worn out physically after the rigidity, but emotionally. In addition to the Trileptal, she has also been given Acetozolamide. The game plan is to wean her off the Trileptal and see how it goes.

2/13/2018

 "See how it goes." I don't think I could roll my eyes any harder and not have them just fall out of my head. Frustrated isn't even in our vocabulary right now. It's the best we can do, though. We are safe at home and together, and that's the only thing that matters right now. Cady and Addy are together again and all is well in the world. 

Cady slept most of last week. She missed her 100 days of school celebration, and the class Valentines Day party. She was so bummed out. She has expressed feelings of sadness, and helplessness. She asked us not long ago why she was born like this, and why her sister was not. This led to the declaration that she wished she wasn't born at all. She is six years old. My heart stopped. I immediately reassured her that there are tons of people who are glad that she is here and that we all love her very much. Our hearts broke again for her. Whether that was the meds talking, I don't know. I realized then and there that there has to be something I can do to reach out and spread the word.

For the first time in probably five years I rejoined Facebook. You can also find me on Instagram. Please. Don't hesitate to pop in and say hello.

Fun Fact: In our eleventh hour at the ER, Rob Gronkowski of the Patriots was upstairs at Barbara Bush signing autographs. We completely missed him by 45 minutes. My poor husband was beside himself. So close...