Saturday, August 7: Update

The streak ended today. Claire started to reflux and lost her last meal of the day around 5:45 PM. While the episode was similar to the first two, we did not need to call emergency services. We were aggressive with our measures and had Claire’s airways clear in a matter of seconds. Switching to action-mode in such a short time frame and for such a quick burst still taxes our energy reserves; however, today’s event was much more moderate than the previous two.

We also realized a pattern is forming that is independent of Claire’s food volume. Claire’s plumbing has been irregular since the accident. When her feeds began while we were at Medical City, she was prescribed a laxative called Miralax that we use on an as needed basis. We gave Claire a dose today and she was agitated all day. Tiffany commented that every time she gives Claire Miralax she seems to have a challenging day. After Claire vomited today, I asked Tiffany if her previous episodes coincided with Miralax doses as well. We have a sneaking suspicion that they do. From an anecdotal perspective, the Miralax instigates digestive action that makes Claire uncomfortable and her vomiting could be apart of the chain reaction. At least that’s what I’m hoping. Because if Miralax is the culprit, then these episodes will be even more manageable. We cut out Miralax today. We will use more traditional methods to clear Claire’s colon: we’ll increase the amount of free water in her system and use baby food prunes to hasten regularity. We hope we have stumbled on a solution.

This minor blip today was couched amongst a very busy day. I spent the first half of the day working on Claire’s standing frame. I took the frame apart, treated all the rust spots with naval jelly before painting the frame over with rust protecting paint. Every joint and bearing was oiled and lubricated. Every surface was cleaned. We now have one of the premier standing frames on the market in great working order and in like new condition. I ordered a single replacement part which will arrive this week. Then Claire gets to take her first test run. We’re excited.

Autumn also have her second to last basketball game today. Heidi and I went to watch and cheer. We also took some photo equipment to capture the team photo. We grabbed the image before the game and the team was all smiles. Had we taken the picture after the game, expressions would have been different. The girls played hard, but they were soundly beaten. They were dragging by the end of the game. It presented the opportunity to have a discussion with Autumn about character and perseverance. She didn’t want to run at the end of the game. She now knows that her dad expects her to run when it’s hardest and I hopeĀ  she begins to expect it of herself.

This weekend seems to be passing us by. There just doesn’t seem to be enough hours in the day right now. We hope your weekend is giving the opportunity to rest. Thank you for thinking about Claire today.