Usually, Val and I don't really like to discuss the positives for fear they will somehow disappear. But in the past we have not discussed them and they disappeared anyway. So why not share?
We have no idea what exactly is helping Samantha the most. Is it the digestive enzymes we started? Perhaps they are allowing her to absorb the EPI-743 and other supplements. Is it the increase in all of her regular supplements? Is it the addition of l-citrulline to her daily meds? Is it the hour a day on the vent we give her as a "break"? Or, is it that we have continued to give her more elecare than we have been previously? As Dr. C likes to say, airway and nutrition are so very important for a child like Samantha. Perhaps, it is a combination of all of the above
Regardless of the reasons behind the improvement, we will take it!
Sorry for such a brief post, but I did want to let everyone who cares about our girl know that she is back on the upswing.
Until next time,
Monica
