Wednesday, September 11, 2013
Kiera is feeling better and sounding better, but has a long road ahead. She has critical care myopathy, basically extreme muscle weakness. She is still on the ventilator and working hard to get back her strength and dexterity. She basically has to re-learn how to sit, stand, walk, use fine motor skills with her hands etc. To give you a good descriptor, Yesterday we were excited because she itched her now with her own hand instead of just rubbing her face against a pillow. She also put weight on her feet, with two people holding her up to stabilize her. It is hard to say how long this will take untill she is well enough for discharge. In the old days when she was on a home ventilator, I think we could have gotten discharged sooner, but now that her baseline is more advanced, it will take longer for her to get back to it. That's all for now. I am definitely tired of the daily hospital visits and appreciative of the fact that when she was inpatient for a year and half when she was born, I didn't have to teach school during that time. The fact of the matter is that employers and others not living this kind of stress don't have the endurance to keep being supportive for the long haul. They see me at work, but most probably have no idea that my daughter is still sick. I doubt any of them have even been appreciative of the fact that I haven't missed a day of work yet. They really don't have a clue how lucky they are to have me. To them, I am just a reflection of my students' test scores and a means to their end.