rettsyndrome.org

Friday, November 27, 2020

This is hard but also easy?

 Well it’s been over two years since I’ve posted here,Avery has had three surgeries. The first in August of 2019. We decided to try this “cute” surgery to tether her spine. The hope was that as she grew, the tether would pull her spine straight as she grew. It didn’t work. We knew that might happen. So, in September of this year she had full spinal fusion. Nine hours. She lost a lot of blood. Was in icu for four days. The amazing care we received was insane. We came home. All good. 

After getting home we link up with the rett clinic and check in via video. 

Maybe a week later, I text Avery’s rett doctor (dr. Mary) and say she has a fever. Dr Mary advises us to go to the ER. Red and I decide to wait to the next morning. I take her in, they do blood work and yikes. Something is very wrong. They transport us to UCSF mission bay. We stay there for 14 days. They had to open her entire incision and wash out the infection. Avery will likely be on antibiotics forever. 

This is all really hard. But every day I tell myself and everyone else-it could be worse. Ive accepted this. This is our life. Avery has literally given us so much. 

But sometimes still I’m so sad. My beautiful girl is not doing all the things. She’s not having sleepovers, or mall trips or anything. I’m grateful we won’t deal with girl drama etc. but it kills me to watch her not participate. Avery is just like me (but stronger) and I try not to think about what she is missing. I just wish things were different. It’s really hard. And I try to be so strong. But sometimes I just can’t be. And I don’t wanna be the person who says “be grateful for what you have”...and I am sooooo grateful...but be GRATEFUL.