2.07.2013

The Cure that we DO have

It's been a long few days. Claire has been up and down and up and down. The days have been filled with seizures. Chloe is getting good at bringing the oxygen to me when Claire needs it, too good at it. This morning, Claire was on the couch as Jared held the mask over her face, Chloe pushed her way through us (we try to not let her see it, even though it bothers her less than it does us) with what she claimed Claire needed. As she draped her beloved blankie over Claire she told us that it would make her better. The truth is, it does. Things like that are what we do have to cope with Rett Syndrome. It was a reminder to me that while I can't take away the seizures or get Claire to talk there is so much that can be done. Today I am preparing to head up to Oakland tomorrow for Katie's Clinic. I believe that treatment in the form of some medication is in our future. I want all of the children affected by it to be ready for bodies that work better, not behind in school because nobody believed in them. The cure that we have today is to live and to live well. For Claire that includes a school that includes her with her peers and teaches her all the stuff that kids her age learn. It also includes time at the beach with friends, indoor skateboarding and our new favorite, wheelchair ballroom dancing. So for now, we press on, working to do what we can because I truly believe that some day soon, there will be a help for her body and you better believe we will be ready for it.


video

2.05.2013

Sunshine and ambulances

Last Friday I woke up feeling amazing. The house was clean, I felt great, Claire had a banner week and Chloe was happy and compliant. After taking the girls to school I enjoyed coffee, met with a friend and sat in the warm sunshine on the beach. I was on my way to pick Chloe up when I got "the" call. One of the calls that you would hope to not get, Claire was choking and the school had to call 911. The responders were already there and I had to convince them to wait for me to get there before they transported her to the hospital. It is a strange conversation to have, a medic, trained with a protocol, not understanding what is and is not an emergency. You see, they were called for the choking, as they arrived on scene Claire had a seizure. A small one by our standards, nothing exciting.  They were ready to administer rescue meds and whisk her off to the ER. Thankfully, Claire has an aide that risked it all to correct the medics, in front of the principal and everyone else. She knew Claire's baseline, that she was alright and how a trip to the ER could be unsettling to her. She got them on the phone with me and I got to have one of the most odd conversations. The medic must have thought I was crazy after he heard the relief in my voice when he told me that she had one short seizure. I had to explain that the doctors at the hospital they were going to go to wouldn't be too helpful and that if she was alright, it would be better for me to take her to the hospital we typically go to. They agreed to wait for me at the school. By the time I got there Claire was coming coming back to her smiley self, the medics were happy to let me take her AMA and commended me for being such a great advocate. I hugged her aid and thanked her for saving Claire's life, had she not done the Heimlich I don't know what would have happened. It was surreal to see how much the people at the school love Claire, they were emotionally exhausted. As we said goodbye, there were a lot of hugs and no dry eyes. I thought about the last time that 911 was called for Claire, I dialed it from her school on Valentine's Day two years ago. I thought that was crazy. When I look back, I can see that slowly our normal has been getting crazier and crazier, seizures, dystonia, a limp purple body have become common. Honestly, I still don't know what to do with that, other than sitting on a beach and soaking in the sun on the good days and smashing something with my hammer on the bad ones. What comforts me is that by what I can only assume is miracles and grace, the days are still good, just like they were two years ago.

So here is the end of this story, we got home, rested, watched a movie with dinner and the girls went to sleep. From 9pm-2:30am Claire was tortured by seizures and vomiting, before eventually falling into a deep restful sleep. Saturday we got her on antibiotics, if she didn't aspirate when she choked she did that night. Jared and I stumbled through the motions of the weekend with the help of coffee. By Sunday night Claire was back to herself, Monday she had a fantastic day at school and we finished it off with an amazing horse pt session. So we are back to normal life, enjoying the days, but, Claire still has Rett Syndrome.