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Sebi's story
www.lovebubbleboy.com
So at long last I write. Sebi is doing well...His IGg
levels continue to go up which can be a good sign
(like maybe B cell function starting!). The only bad
news to report is that Xavier got a cold and Sebi got it
(and believe me I tried to not let that happen....but
with a three year old it just proved impossible). And
I have the cold too! So, now I am constantly checking
Sebastian for a fever (we don't want that because that
means a hospital visit for IV meds). Sebi is eating
better and LOVES gogurt...he is up to about 3 a day
and right now we have blue so his diapers are just
beautiful. Everyday he shows a little more interest in
food. Grandma Teri left on Sunday and it has been a
big change for me....being the one for cooking and
cleaning and care giving and keeping Sebi busy
without giving him free reign in the house (which he
fights for). He has quite the temper - really - he
doesn't get his way he pinches your face, scratches
and pulls your hair out....say no and he flips out even
more. wow. Since they took his line out he still is
getting blood draws...after the hour ordeal on Monday
(they needed a lot of blood so he got stuck three
times) they think he is doing well enough to have
blood drawn every other week which is great! He has
really just gotten so far so fast. Really, some kids are
still on IV food at this point and I have been told since
the beginning to almost expect to be back at the
hospital for some fever and that there are always
bumps in the road - so far no bumps!!! He is
improving amazingly fast. No songs of victory yet but
we are pleased. He is out of the danger area for
acute graft vs. host (he had none! yay!) and now I
guess we will watch for any signs of chronic graft vs.
host (can happen after 90 days up to a year). His
chances for this are a bit lower because he did not
have any acute forms of gvh. He still is very hairy
(you may see some pictures of his back - washing it is
like washing a rug) and his face is still quite round
and chunky. We do a walk most days but he is
getting more difficult with the whole mask
thing...always wants it off so that is a bit of a
challenge. Will be like a dream when they wean him
off of isolation...I can not really imagine an almost
normal life - I'm getting anxious for it. I see him
doing so well I want to hurry up the process even
more. Looking back at the pictures today (from a
while ago until present that we loaded tonight) It's
almost like a dream...did that really happen? He truly
is an amazing boy...he must have some big plans for
his life. Going to bed now...to keep up with these
two I need my sleep!
