I sailed away one stormbright day when I took my fetters and my whims to play. We cast about, soul-hollowed out, fell hot on the shore and cried no more.

too much joy and too much sadness
reuben is so ill
it is breaking my heart
i can't believe, this is reality

i thought i left my deliquent writing-at-the-very-last-minute-so-help-me-gods-of-elocuting-to-a-glowing-screen days behind, first in san francisco, undergrad. then in bristol, postgrad ( Read more... )

it's simply depressing to spend hours searching on the internet, followed by hours ringing expensive phonelines, trying to find insurance for my little kidney-failing boy to go to stay in the u.s., one of the most expensive places in the world to receive healthcare. i've made peace with the fact that we won't be going to "developing nations," or ( Read more... )

i pretty much nailed all my 2013 resolutions. pow pow pow! and reuben had his three surgeries and has avoided dialysis. i made mummy friends. i learned to sew. nick has seven months left of foundation training. we're saddling up to the ol' hitching post and then spending six months in the u.s. huzzah huzzah! marrying the specimen of my incessant ( Read more... )

i didn't choose the thug life, the thug life chose me.

we now have a set date for the renal community nurses to come speak with us next month about live donor transplant. ideally the child would be 10-12 kilos to receive an adult kidney (the larger the veins the better chance of adequately supplying the transplanted organ), and reuben is only 8.7k at the moment. his weight gain has slowed to about 100g ( Read more... )

i have an exciting development! when m bothe was visiting he got ou old laptop to wok, except some of the kes dont wok. those kes ae ...oh wait, i cant tell ou. this is going to be incompehensible. but anwa, i can wite it while eu sleeps. things have been good when m paents visited, we went to fance and all ove the southwest and lotsa time b the ( Read more... )

just to note for posterity that i ran 5k last week on the nearby meadow trails. i ran 10 min, walked 1 minute, repeated, finished in under 30min. reuben's bloods last thursday showed a creatinine of 109...which is the lowest it has been since last july. it's an imprecise indicator but corresponding estimated kidney function would be about 17%. ( Read more... )

reuben went into hospital for four days at the beginning of december, two days after his minor surgery (unfortunately surgeon not able to insert stent as planned). his kidney almost shut down, but he pulled out of it, the little fighter that he is. that put a bit of a damper on our holidays. bon flew out from austria last minute to support us, so ( Read more... )