Hi Karen,
We will be going to the NIH on the 13th as Alex is having CNS problems which
are not being controlled with the anakinra, It will be one month from when
we should have gone up but they feel that he should be seen earlier. I'm not
sure how Seth is but with Alex you can't tell when the pressure is up as his
pain threshold is so high. He had kidney stones resently. He came down at
4am and told us that his side hurt. John gave him some advil and sent him
back up to bed, when he came down at 7am with the same story I knew that
there was more to this than side ache. I wondered if his IVC was closing
down as we seen some narrowing at his last cardiac cath. They had managed to
stent one area but the other area was to near to where the kidney come
in.Other than that he is doing great. Hope to see any of you. I think we
will be in patients this time..

love Kate