Tuesday, September 14: Update

After a month and a half at home, we seem to be developing our routine. Claire’s early complications are manageable and her schedule more predictable. The girls are in full-swing at school and we have a mostly regular schedule. We fight to keep things in perspective, especially when it comes to the marginal value of each new change Claire shows. Think of it like your first dollar: moving from zero to a dollar gives you much more enjoyment than moving from $10,000 to $10,001 dollars. But it’s still a dollar. We were vigilant to watch for Claire’s early changes because everything was new again and portended our hopes of a great recovery. Today’s changes carry the same hopes, however, they are sometimes diminished in a sea of previous changes. It’s an important balance for us to strike.

We have seen noticeable differences with Claire over the last week. Her eyes have become more active and track faster to sounds and light. The jury is still out on what she can see; but we are confident that her brain is processing more aggressively. My hypothesis right now is that Claire locks silhouetted areas much easier right now. When we are backlit, Claire locks onto our faces in greater earnest. She may not be able to pick out our features yet, but I do think she is seeing our shape. When subjects are flat and evenly lit, Claire’s eyes wander more, looking for higher contrast interests. It’s still an improvement.

We started weaning Claire off her final dose of Chlonazapam this week. Yesterday was rough: the withdrawals made Claire irritable and her stomach upset. Today was much different. Claire was even-tempered and didn’t show any of the signs she exhibited yesterday. After the Chlonozapam is out of her system, we will start working on the final Seroquel dose. After this is complete, Claire will be on a single medication around the clock and one sleep aid at night. It’s odd to look at the multiple paged prescription document we came home with and realize a two medication reality is on the horizon. We hope things go well and we don’t see a reversion to¬† increased spasticity or agitation.

Tiffany and my social lives have been very busy of late. We had dinner with Claire’s Medical City doctor and his wife on Saturday night. It was awesome. We didn’t realize how much good it would do us. It did a lot. We capped off the weekend at another family friend’s house. Homemade beer, popcorn and cake were on the menu. It was a nice send off for the weekend.

My Aunt Grace joined us for a couple of days and we loved having her here. She helped with the girls, fed us and chilled out. Autumn and Heidi are still talking about her visit and eager to meet their second cousins after hearing stories. We hope to see her soon.

Thank you again for all your prayers and support. I plan to post some pictures with the next update. Thank you for continuing to follow Claire’s story, especially as the posting frequency diminishes. We hope to share continued good news soon.

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