Wednesday, September 22: Update

The first signs of Fall are beginning to show. Temperatures have had a sustainable drop in north Texas (mid-80s!) and the first leaves are starting to change. The new season heralds the return of some family members this week. I picked up my sister, Bryanna, today and we’re picking up Tiffany’s parents tonight. The house is full once more!

Bryanna’s arrival today was a surprise for half the girls in the house. Autumn and Heidi didn’t know she was coming. Neither did my mom. It’s been a surprise two weeks in the making. It worked. It took a solid 20 seconds for my mom to process that Bryanna was standing in front of her when we walked through the door. She was stunned. The waterworks soon followed as my mom played see-saw with her emotions. Giggling and smiles was intermixed with crying and tears. It reminded me of when we brought Autumn home: like Autumn, my mom is so overcome with emotion she would rather escape everyone’s view and gather herself before addressing the situation. It’s fun to watch. And funny.

While my mom and Bryanna caught up, Claire observed. We’re seeing this behavior with greater frequency now. Claire appears to pay closer attention to the events around her now. When we enter into her field of vision, her eyes regularly track to our faces. They focus and hold the subject for longer periods. If we speak to her, she’ll watch our faces with greater interest. It’s very minor and slight, however, we notice the difference now compared to a few weeks ago.

Cutting Claire’s Chlonozapam dose in half at nights has also seemed to normalize. We’re seeing increased movement with her right leg now too. The Chlonozapam acts as an anti-anxiety medication: it was prescribed when the Atavan and Methadone weren’t doing an adequate job regulating her neural storming. While it helped with her posturing when she needed it, it’s not as imperative that we use it now.  We think it was contributing to the limited extremity usage on her right side as well. Now that it is a lower dose, we’ve seen a significant increase of muscle use on her right side. This set off a new set of challenges, however, we think we’ve got solutions for those now too.

We seen the biggest help come from the horse therapy sessions. We’re very happy that we’re on a twice a week schedule now. Claire got to test drive her new helmet on Monday. It was a little heavier than the helmet she used before, but she flexed her neck muscles and held her head firm. Muscle fatigue started to set in near the end of the session, a sign of how hard she’d been working. She slept the whole way home, just to make sure we were convinced of her effort.

We are grateful for your words of encouragement and support. We are looking forward to more positive updates and news. Enjoy the rest of your week!