Friday, November 19: Update

I learned about another Coppell family today that suffered their own tragedy earlier this year. Todd and Tara Storch lost their 13 year-old daughter Taylor while on vacation in Colorado. I hope many of you have already heard their story and have been keeping their family in mind. For those of you, like me, that are hearing this for the first time, I encourage you to read their story. In short, Taylor was an organ donor. Because of this, her family was able to hear Taylor’s heart beating again after she’d died, in the body of a recipient. The woman carrying Taylor’s heart is a mom. Taylor’s gift wasn’t the hardware keeping her alive: it was the extra years the mom received to watch her children grow. The Storch’s set up a foundation in Taylor’s name called Taylor’s Gift. The website gives you the opportunity to become an organ donor in under 90 seconds. It’s easy. It’s fast. Please take the time to fill out the online form.

Claire’s adjustments to the new house have been improving. Her reflux has moderated. Her disposition has been calm. Aside from a nasty upper respiratory cold that took hold early this week, her progress has all been forward. The past three weeks have been encouraging for us and we hope for Claire.

One development in particular has bolstered our resolve. Claire is responding with more consistency to commands. We decided to start testing whether she can understand a request and deliver a response. This sounds simple enough, however, it is dangerous area, both emotionally and scientifically. Tiffany and I have been acutely aware of our tendency for confirmation bias: we want to see improvement and want to make sure we’re not reading false indicators. So were are very careful to design a communication system with Claire that doesn’t lead to false positives. The difficulty with this is that as Claire gains additional control over her muscles, she still battles the remnants of neurological storming that cause her limbs to twitch and spasm involuntarily. For example, if we ask Claire a question like “Are you hungry” and we assign a finger squeeze as the affirmative, we have a low confidence level on whether or not a finger squeeze really means “yes.” We venture that we perceive more pressure when she squeezes after we ask a question, however, we can’t be sure because she squeezes at varying pressures without the question. So we need a signal that is more definitive.

We decided to try an arm raise with Claire. We settled on this because the arm raise is so infrequent and it takes a significant amount of effort on her part. It also provides the opportunity to test whether she is really answering a question or not because we follow up the question with the command “Now put your arm down” which is equally difficult  as raising it. The system is cumbersome because it is a series of closed ended questions. It does, however, give a vehicle to communicate simple needs and wants. It’s working. We are confident that the system operates well the majority of the time. Tiffany and I tested it together first last weekend when Claire was upset. We explained to her that she needed to raise her arm high when she wanted to answer “yes” and then peppered her with a series of questions. When we asked her if she wanted to move to the floor, her arm went up, and when we told her to put her arm down, she complied. When we moved her to the floor, she stopped being upset. We were very encouraged.

We’ve had multiple opportunities to try out the system over the last week. It isn’t foolproof, but it works most of the time. We are still wary of creating false positives, however, we are hopeful that Claire feels a little more understood than she did a week ago.

Now what this means for her brain activity is still undetermined. Is she able to process requests and commands? It appears so. Is she contemplating them on a higher cognitive level than base needs and rewards? I don’t know. I certainly hope so and the father in me thinks she is operating at a higher level. Only time will tell.

This progress has been very welcome as the emotional war continues. The end of this month indicates the six month horizon. It is an arbitrary time line, particularly where young children are concerned, yet it lurks in the back of our mind. We continue to wonder why she hasn’t made more progress. We battle those thoughts reminding ourselves that she continues to move forward with no change in pace. We continue to miss her personality, the little things that always made us smile. And it’s taking its toll on everybody.

Autumn and Heidi have been watching old family videos with Claire as therapy. I am thankful that they continue to express how they are feeling about the past six months. Autumn will mention she misses the way things used to be and we nod and tell her that we miss it too. Within minutes of expressing herself, however, Autumn is back at Claire’s side discussing what game they should all play. The other night they decided on Candyland. The girls made sure Claire won. Then she won at Sorry. They’re good girls and they love their sister.

Thank you for keeping our family in mind and praying for Claire. We maintain our hopes for Claire, that she will soon smile, crawl, walk and talk. Your support helps us when we are tired and forlorn. We hope the coming holidays are spent with family and friends that show you the same love you have shown us.

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Saturday, November 6: Update

We’re in the house. It was official last Saturday, the 30th. Another great group of friends helped us move the last vestiges of apartment living into the house. And the joys of home ownership were fully realized.

I need to take care of the most important business before getting into the updates, and it’s the right month for it: thanks giving. The overwhelming support has continued over the last three weeks as we made the transition to the home. Our minds boggle knowing we closed on October 15th. In a mere two weeks, the house was move-in ready and immaculate. There are so many people who helped and they have our gratitude. They helped make the house our home.

Because of all the help, we’ve been able to get settled much more quickly than anticipated. The two that have had the hardest time adjusting are Autumn and Claire. Autumn’s first night in the house was a sea of tears: she missed the apartment. Autumn is a caricature of change for the rest of us. What we often feel inside and hide, Autumn displays in all its glory. Tears, sniffles, red eyes and wailing accompany Autumn’s emotions. No amount of discussion or rationale appeases her: she just needs time to get used to the new world. And when all is said and done, Autumn adapts to change faster that most of us, in part because she deals with her grief so dramatically in one fell swoop, and then moves on.

Claire’s difficulties have been more prolonged. Claire’s reflux returned with a vengeance for the first few days and is only now abating. We had to install a whole house air purifier to eliminate microbes and mitigate the possibility of airborne infection for Claire at the house. The air is clear, the environment clean; however, the volume of change has upset Claire’s stasis. She has started to calm down again and better days are returning.

Claire continues to move forward. Her eyes and focus are getting stronger week by week. She Her therapists have been so pleased with her progress that they recommended adding a day of speech therapy back into Claire’s schedule. Claire is following commands with much improved consistency and this let’s the speech therapist work with greater efficacy. We’re excited for her progress and while we still wish it was faster, we are glad it’s still forward.

Claire greeted us in a new way this morning as well. It’s been several months since we’ve seen Claire stretch and she did it this morning. Her legs were curled up, she stretched them out and then brought them back up to her chest. Stretching this way is a voluntary movement and we’re excited to see more purposeful effort like this. It seems the past two weeks have had a greater volume of these small steps than normal. It helps fuel our hope.

 

It’s been a couple of months in the making, but tonight was capped off with more family news: my little sister Bryanna accepted Brian’s proposal. Recall that Brian came out here with Bryanna while Claire was still at OCH. His support for my little sister and us the past several months has spoken volumes. We’re all excited to extend our family further and proud of Bryanna. We wish we could be with them to celebrate tonight and look forward to a celebratory glass of wine when they come out in December.

 

We hope you’re enjoying the season change and look forward to seeing many of you over the coming weeks. Thank you for your support and prayers.