Today’s post has two pieces: one a quick update on Claire and the other a request to consider contributing to a local youth cause (Link here, and more information later).
The Texas allergy season has taken a toll on the general population and we have not been spared. The last month has been particularly challenging for Claire due to her lack of motor control. Sitting upright, walking around and being active has a strong impact on our respiratory functions particularly when our ears, nose and throat are under attack by airborne particles. Claire struggles to manage the runny nose, watery eyes and swollen airway tissue despite the reinforced arsenal from Flonase, Zyrtec and Albuterol. The goal becomes to manage as well as possible and become experts in pattern recognition. Like being a new parent who is able to recognize the type and nature of a baby’s cry, we’re able to recognize the type and nature of coughs and whether it will prompt a more vicious fit that ends with Claire losing her lunch, or something she can manage on her own. Heidi and Autumn both can recognize when Claire needs help now and are usually first to jump up and help her, patting her chest, or leaning her forward so she can manage her swallowing.
We have another check-in with the ortho doctors this week to evaluate Claire’s scoliosis. Her pulmonary functions haven’t deteriorated too much, so the specialists are unlikely to make a surgery recommendation. We’re more interested to hear about Claire’s growth since the last visit. Claire has nearly outgrown her new chair and sitting in her molded seat does not seem comfortable. So getting a new chair, or adjustment will be on the docket and hopefully will enable her to sit upright for longer periods of time.
Aside from the seasonal discomfort, we don’t have many complaints. Claire continues to be in good spirits and we continue to make efforts to see her smile or laugh each day. Our conversations with Autumn and Heidi have evolved over the last year as they’ve gotten older and started to form more and more of their own opinions. It’s fun.
We’d also like to ask you consider the following giving opportunity.
This link will take you to a GoFundMe page for a local high school project that is meaningful to us for obvious reasons.
Here’s the summary from their page:
“Many of the special needs students at Coppell High School have impairments or syndromes that cannot be cured. Their disabilities may impair speech, motor control, vision, and processing; issues that can often make it challenging for them to do everyday simple tasks. Their bodies develop differently from others and an easy task, like flipping a light switch, might take weeks or months to learn. The goal for our team – Disruptive Innovation, is to create a device with current technology that will help improve students’ skills faster while helping the teachers track their progress more efficiently.”
We understand you have many choices where to make donations and would ask you consider donating to this cause. We find it compelling for two reasons: first, we have a fair amount of confirmation bias due to our family structure and circumstances; and second, and more important, it’s an investment in STEM kids that are eager to develop meaningful solutions and healthcare innovation.
Will this lead to a major breakthrough or a major therapeutic device for impaired kids like Claire. Not likely. But does it contribute to foster the opportunity that one, two or three of these kids goes on to drive a major breakthrough? Yes. Does it encourage curiosity, to work through failure, learn from it and drive the innovation that will help Claire and kids like Claire in the future. Yes.
We have as many as 10,000 followers for Claire’s and our family’s journey. I’d like to imagine that if we were able to get just 5% of you to give $5 or $10, we could help make a meaningful dent for this team’s fundraising goal.
Our Claire Journal 