A theme is starting to emerge: the lag time between posts is growing. I’d like to blame it on the holidays, but that won’t work. I anticipate that an equilibrium will come soon, but unless things change soon, the post following this one is estimated to arrive near the end of February. I’ll see what I can do to make sure that doesn’t happen.
That being said time has not allowed for posting. My work responsibilities have started to pick up and I’m back to booking shoots with clients on the weekends. Family time takes up the majority of the remaining time and preparation for the Spring running season is well under way. While busy, keeping everyone updated is still important, though it follows a long list of higher priorities. Thank you for continuing to keep Claire in mind in between posts.
Your thoughts have not gone unrewarded. Claire continues to make progress. The biggest development since the last post is with Claire’s oral therapy. Claire has a swallow study conducted right before Christmas. The study consists of four consistency stages: honey, nectar, liquid and pulp. Claire passed three of the four. She aspirated the liquid. That was to be expected. Consider what we have to do when we swallow. First, we are usually aware that something is being placed in our mouth and we have intent to swallow. Secondly, we have the ability to maneuver the food or drink into position that gives our esophagus time to protect our windpipe. Claire can’t do this with liquids. Thin, watery liquids move very quickly to the back of the throat. Claire doesn’t have time to notice something new in her mouth before it’s making a rampant march down her airway. This condition is labeled as a delayed swallow. A delayed swallow, however, does not preclude her from consuming the other consistency types. Because they do not move as quickly, Claire recognizes the substance in her mouth and is able to swallow without leakage into her airways. This was great news.
We were so encouraged because this milestone yields more therapy options. The therapists have asked the doctors to approve a special oral therapy involving food that is designed to strengthen her esophageal and mouth muscles. This means great things for eating, and it also has corollary effects on speech effort. We have not started the new therapy yet because we are waiting on doctor approval. But it was good news and we’re excited to expand her therapy palette.
In addition to Claire’ s therapy changes, we’ve also been noticing changes with Claire’s vision. She is more alert, her eyes more active. Claire picks up on movement at the corners of her eyes more and is tracking objects regularly. She is also watching TV with more purpose and attention. For the last three months, her gaze would wander more. She is fixating on things with greater consistency now. Tiffany got Claire a set of glow-markers for Christmas and that has helped her exercise her vision further. We’re enjoying the changes.
The New Year brought a new school with it as well for Autumn and Heidi. This was their first week and we couldn’t be more relieved with the administration and teachers. They have been great and made extra effort to make our girls feel welcome, assuaging the shock that comes with such an abrupt change.
Our house was full over Christmas. My parents and siblings all came down to Texas. Only one member was missing: my brother-in-law to be, David, couldn’t join us for the holiday as he balanced work and time with his family. We look forward to seeing him soon. I was excited on Christmas Day because I finally got to announce our family gift. Many suspected it and many were right: we’re getting a puppy. The litter was born on December 22 and will be ready to come home in mid-February. We’re adopting a Bernese Mountain Dog. While everything is going according to plan so far, the jury is still out on the name. Nevertheless, we’re all excited! We get to pick our new puppy next week on the 15th.
All in all, the holidays were enjoyable. It was fun having family so close and packed in. And as we enter into the new year, our calendar is already filling up again with out-of-town guests. It makes us happy.
We hope your holidays were equally enjoyable. Thank you as always for your thoughts and prayers. We will continue to keep you updated on Claire’s progress.