chats...

[Guest guest]

hi everyone;

sorry for the cross-post... finally got a new computer (pity the fool

who approved me for a charge card)... anyway, sorry i've been away so long,

my old computer completely crashed on me. just wanted to know:

are the chats still going on?

did anyone ever get the chance to try that new chat room

i set up? computer broke right after it was set up, and i never got a chance

to try it out... would like to try it at least once, if anyone is

interested-- it looks like it is a lot easier and faster than the other chat

rooms, but again, i never got to try it out yet... don't mean to be a pest, i

was just hoping to make things a little easier for everyone... the address is

http://clubs.yahoo.com/clubs/mitochondrialdisorders

spoke to orion's dr last week-- the autopsy report is STILL not

finished-- on february 3rd it will be a year since he died... i am so

frustrated, especially since i know the actual tests have been finished for a

month or two now...

one piece of (sort of) good news: dr consolini received a study from

france on a disease very similar to orion's... they have found that if the

FEL is caught early enough, bone marrow transplants have actually CURED the

disease-- not just put it into remission but actually CURED it... but the

thing is, they have to catch it very early and find a donar in time. this

will be difficult, especially considering that in orion's case, he didn't

show symptoms until he was 2 months old, and died when he was 4 1/2 months.

again, this isn't the exact thing orion had (we're still getting that " never

seen before " response), but it is similar, so we're hoping that if we do have

another affected child, this will be something we can try...

we are opting to skip church this year... can't bear to see all the

happy families with all of their happy, healthy children, all excited about

santa coming... know it sounds mean but it will just be too hard. this would

have been the first year orion would know about santa (he was only 3 months

old last year); and last year on christmas eve, we were in the ER with him,

hearing a neurosurgeon explain to us what " brain atrophy " was...

anyway, sorry to be so depressing-- i just wanted to check in with

everyone... hope i haven't brought anyone down... hope you all have a

wonderful, happy christmas, with no unexpected hospital trips or anything. i

will be thinking about all of you and your angels...

julia

orion's mommy

mitochondrial cytopathy & familial erythrophagocytic lymphohistiocytosis

september 18, 1998 to february 3, 1999

MERRY CHRISTMAS ORION!!!