Tonight, we have Hannah hooked up to both her humidified trach collar and her oxygen.   This is a first. We actually haven’t needed to use the humidified trach collar (keeps her trach moist while she sleeps) in months in the old house.   I don’t know whether it is much dryer in this house or the […]

Our Tuesday thru Thursday nurse was fired today.   I got the call 5 minutes before the end of her shift from the nursing supervisors to let me know that she wasn’t going to be back.  They couldn’t give me a tangible reason why, but obviously it was something serious enough that it had to […]

I have been emailing with a few families over the past couple of weeks who have children that have been newly diagnosed with neuronopathic Gaucher’s disease. One mom asked me if she should “hold out for hope for a treatment to save” her child diagnosed with type 2.    Another dad I emailed with described one […]