Monday, May 2: Update

Little birds have been perching on my shoulder the past month and whispering in my ear: “Hey you. Yeah you. Write another blog post. We need an update.” I’ve brushed them off for as long as I could.

Needless to say, we’re going on nearly three months without an update. I apologize for the radio silence. I understand how many people are eager to hear about Claire’s progress. We are grateful, as always, with the support for Claire. We also appreciate the angst that people have shown over hearing about her trials and victories.We have much to report in each category.

Before getting to Claire’s progress, however, I have also been negligent in posting about an event that was held in Claire’s honor in March. My dad’s sizable California family (my grandparents raised 14 kids) organized a fundraiser for our family, a charity dinner that was an unexpected blessing. We were overwhelmed with people’s generosity and sacrifice. It humbled us.

We were also very happy with the timing of the event. It coincided with the biggest news we’d had in a while. Claire smiled. We were aware that it was coming. For a couple weeks prior to actually getting her to crack a smile, we were noticing substantial changes in Claire’s facial composition. Her eyebrows were relaxing more frequently. Her jaw line was more loose. Her mouth was beginning to make different shapes. So for a full week we’d been making fools of ourselves trying to get Claire to smile. Tiffany was on the phone one night while I was taking my turn as the fool. Her eyes got bright and started to sparkle and then the corners of her mouth started to tug. Tiffany rushed in to the room when I yelled “She smiled” and two minutes later was followed by the people with whom she’d been talking, our neighbor’s the Barnes. It put us all over the moon.

That night we made calls to family members adding to our joy. And for the subsequent three days we did all manner of things to get her to smile. But Heidi was holding the ace in the hole. My parents came into town three days after Claire’s first smile. We didn’t hesitate to show them Claire’s new trick. The following Monday, while I was at work, Claire trotted out her biggest act with Heidi leading the way. Heidi was trying to get Claire to smile and chose a rather macabre method of doing so. “Claire, I’m falling down a cliff, ” Heidi’s story begins. This is followed by a perilous fall down said cliff and the requisite squish at the bottom. Claire smiled. Then she laughed.

It started as a little laugh. And nobody was certain at first. So Tiffany encouraged Heidi to fall off the cliff again. The second time it was unmistakable. Claire laughed from her belly, a cute, full laugh. The emotions came quick for Tiffany. It had been over nine months since we’d heard Claire laugh. Both Tiffany and I can clearly remember the last thing Claire said to us before the accident. We were not certain when we hear a piece of her again. Instead of words, it was a laugh. And it brought a tide of emotion. While I didn’t get to see it, I got to hear it moments after the first one when they called me at work. It’s a beautiful sound. We still smile every time she laughs. And we’re bigger fools than ever trying to get her to laugh every day.

Claire is now laughing at least once a day. The first day Claire spent a significant portion laughing. At one point Tiffany discovered a new way of making Claire laugh, to the point that Claire was having trouble catching her breath. After that first day, however, Claire took a break from laughing. Smiling was becoming an everyday occurrence; however, we’d have to wait another week before we’d hear her laugh again. Now we don’t have to wait as long.

The laughing started out with slapstick humor, the gut reaction to something we find internally amusing. Now Claire is laughing at more subtle forms of humor. This has coincided with an increase in Claire’s awareness. She’s much more aware of her surroundings and pays attention to social cues and communication more acutely. She’s also starting to remember things. We can’t determine how she is remembering things: does she actually recall the stimuli or is there something deep seated in her brain that is triggering emotion? We do believe, however, that she is remembering things to a degree. One item to which Claire responds is a viral video she would often watch before her accident called “Kitten Inspired by Kittens” (http://youtu.be/FtX8nswnUKU). Tiffany was talking with Becky one day about Claire and mentioned Claire’s affinity for the video. Tiffany started quoting the video and when she looked over, Claire was smiling. The video is now a sure thing to get Claire to smile and she’s back to watching it over and over.

Claire’s awareness has also translated over to therapy sessions. Claire continues to progress with oral therapy, each week increasing the amount she is able to swallow without coughing. She’s also started working on reaching out and touching objects in PT and OT. Her efforts here are very labored. Claire has not been able to do much in the area of building up her limb strength. Her core muscles are getting stronger due to horse therapy, yet her arms and legs still lack coordination and purpose. This makes sense since the primary area of her brain that was injured controls motor movement.

Despite the slow progress with her motor movement, Claire’s doctor expressed a degree of confidence that Claire’s cognitive faculties have been protected. This is consistent with Claire’s awareness and response to humor as well. This means that the bulk of our effort will continue to be directed at the physical side of things.

Her mouth is one of those areas. The oral therapy has been making Claire’s mouth more responsive and we’ve been noticing a more concerted effort to make new noises. We temper our hopes, but are eager to see what Claire can accomplish as we ramp up her speech therapy. We want her to talk so much so she can express herself again.

The key takeaway over the last two and a half months is that Claire continues to make progress. There have been some seminal events, yet progress remains slow. But it’s still progress.

Autumn and Heidi are doing well. Heidi is now enrolled in violin lessons and Autumn is back at piano. Both girls are registered for two camps this summer. Both are going to golf camp, while each has her own special camp: Heidi is going to science camp and Autumn to theater camp.

I enrolled Tiffany in a book club, so she now has to get out of the house at least once a month. After a year lay-off, I’m finally getting back to studio work. Eiger is a puppy. And he’s good at being a puppy. So we’re all puppy tired. But he’s a good dog, loving and sweet.

I hit on the high points, and I’m sure to have missed a lot of the details. I’ll be watching the comments section for any questions and update through there. Thank you again for your support and hopes. We are happy to share this news with Claire’s army.

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