Monday, August 9: Update

Last night was a long night that followed a long day. Because Claire has been increasingly breathing through her mouth and because she is unable to drink liquids, her throat is raw and swallowing is labored. We bought some chloraseptic spray yesterday because she can swallow trace amounts of liquid. We had mixed results with its efficacy. We also broke out our warm humidifier. That seemed to help.

The problem is that a solution to one problem creates its own set. The warm air humidifier made her room muggy and heavy. The moisture rested on Claire’s skin and made her sweat. This is not good. Claire doesn’t have the body control to shift her body during the night. The pressure points with the bed can cause bed sores and skin breakdown if we do not shift her on a regular basis; however, skin breakdown with Claire only occurs when her skin is moist. If she is dry through the night, we don’t see any signs of developing bedsores. Aside from waking up at odd hours last night – which is off for Claire – she also developed some mild bed sores because of the warm, humid air. So we killed the warm air humidifier.

But we’re still left with Claire’s sore throat. Claire woke up with a mild fever today and we decided to take her in to see the doctor. Claire’s thrush had returned and the prescribed treatment wasn’t working. The doctor thinks that Claire’s sore throat could be a product of the thrush moving further down her throat. So we picked up a treatment today to combat the thrush. We also picked up a cool mist humidifier with hopes that we can avoid the downsides that came with the other. We hope her throat stops giving her fits soon and she can sleep and breathe easier.

This typifies our new reality. Every day is an experiment. Cause-and-effect is difficult to determine and may take several days to reveal itself. But we feel like we’re getting a better hold on things. It’s an education about ourselves as we learn how much we take for granted. We don’t remember how valuable it is to breathe through our nose until a cold forces us through a night as mouth-breathers: the ensuing sore throat reminds us of the body’s proper, automatic function. We hope Claire can soon return to that mode.

Aside from these setbacks, Claire continues to show mild small improvements. She continues to improve her command response and seems to be making more effort to move her limbs with purpose. We are increasing the number of sensory inputs with her and she is responding well. We placed a large order for oral and speech therapy tools this weekend and we’re looking forward to incorporating some more aggressive at-home therapy in those areas.

Autumn and Heidi got to spend the day with our good friends the Schmiseks. They took our the girls to the library. Heidi was more content following Marnie Schmisek to the adult non-fiction section of the library to make her selections. Among her more interesting choices was the “Guide to Buying Pearls.” She’s been fascinated with pearls since my mom told her a story about clams. She has a big appetite for knowledge. I like that.

Tomorrow is the return to therapy. Please let us know if you’d like to visit Claire. If you’re so inclined, we would love to have you come. I’m going to work on getting a schedule set up via the blog. A number of people have offered to come read Claire books or sit and talk with her. We’d like that and think it will help her. I will let you know how we will coordinate visitors in the next week or two.

Thank you for all your hopes and support. You bless us.

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