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Every day our little fighter, Arrowen, struggles on. She has been dealing with what could best be described as spastic fits. These consist of her entire body stiffening, muscles become incredibly tight, her nose and throat get blocked with snot and thick ropey saliva, and she gets extremely annoyed/angry. The onset of these episodes seem varied. Sometimes it seems that it is her inability to breathe through thick mucus that is the trigger, other times it seems the breathing difficulties come after the body stiffness. Suffice it to say that Nicole and I have entertained numerous theories, none of which has proven itself conclusive. We have devised various methods to combat these fits and to try to prevent their occurence. For a brief period we think we have found the cure/solution, only to find that we were only fooling ourselves. The accepted methods for dealing with extreme spasticity are barbituates or botox injections into the muscle tissue. We had tried giving her some camomile tea in her feeding tube and that seemed to be working for a while, but not really any longer.
Whatever you imagine this is like from reading this description, believe me it is much worse. With her heart pounding away in her chest like it is fit to explode; her body turning red and mottled as she struggles to breathe; and the pair of us trying to de-escalate the situation while desperately attempting to suction out the mucus to clear her passageways; it is like an episode of ER albeit without the fancy machines in the background going 'beep boop.'
The effect of these episodes on the pair of us is really only outdone by their effect on her. After an hour or so of one of these fits, one is simultaneously left totally drained and wired with adrenaline. But how can you focus on your own discomfort after watching hers? Generally though once the episode is over she sports a look of quiet contemplation and peace. Or is it just utter exhaustion?
Yesterday we took her back to the hospital to see the orthopedic doctor to restart her leg casts to correct the clubfoot on her left side. She went through the procedure with a minimum of fuss, but since she has been home, the attacks have been much more frequent and often more extreme and long-lasting. It would appear that having her entire leg in a cast bent at the knee is exascerbating the situation. She has probably had the equivalent of a week's worth of fits in the space of 24 hours. It could be coincidental, so we are trying to give it a bit more time to see if she calms down. If the attacks continue then it looks like we'll be removing the cast. If it comes to that then her clubfoot will have to be dealt with through manipulation and taping. There is a method for doing this that originated in France, but, unfortunately, there does not appear to be any practioners of this method here in Thailand. The internet only provides information about it in generalized terms, but nothing about the specific techniques. Guess it will come down to Nicole and I winging it based upon common (or is it uncommon?) sense.
Anyhow, despite the sometimes traumatic nature of life with Arrowen, we are enjoying her presence and feeling inspired by her incredibly strong spirit. On a lighter note, we weighed her before she was put in the cast, and she has now managed to reach the bottom of the 'normal' weight curve, something that is not supposed to have happened.