i've cancelled my hiatus.

okay, so i wasn't gone on purpose...i think i just got super lazy? ok, maybe i didn't do that either. you see, my original purpose for starting this blog was to document what we were going through with e's disease and share with others how we handle things and where my head, as a mother through all of this insanity, is at. thankfully, we have had a pretty easy go of things this past year and there hasn't been too terribly much to report.

i suppose one item to note to other parents out there is that we did get through seasonal illness without a hospital stay. twice. i decided to meet with one of the four hemotologists in the practice and plead my case about my knowledge and ability to care for and access e's port. and that if there were a cold this season, which there inevitably would be, that i would be more than happy to treat him at home until we were sure that there were an infection in his port that would mandate a hospital stay. i had the full backing of the head hemo nurse sara, and it was decided that i could handle this stuff at home if we should need to. and i did. twice. e had two horrid colds this past december and none of them landed us in the hospital. and thank whoever you believe in for that, because the first fever lasted eight days. it would have been miserable in there for over a week.

we are still on prophy treatment, but have gone back to a monday/wednesday/friday dosing schedule. e had some bloodwork right after the first of the year and his levels seem to have elevated back to the 5% range. nobody seems to know why his levels have fluxuated so much, but we are certianly pleased to see his levels close to where they were during his first six months of life.

i intend to update more often (shout out to allison for kicking my ass into writing), even if the original intention of this site may have to shift to keep up with the frequency.