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well i know i have not been here alot... some might recall a month or

so ago i got some really bad news about tiffanie and her brain

deformity. well i will post that part of the update in a second...

but first i have good news. apon exam tiffanie had NO signs of active

disease.... and acording to the last coupple labs her labs have been

NORMAL! so it seems the remicade is doing awsome for her.

now about the deformity.... on monday tiffanie had her MRI... and

today the appt with the sergeon. there really is not easy way to post

this so i am sorry if it might not make much sense......

her MRi showed a coupple things. one; that she does indeed have the

chiari malformation. two; they also did a view to measure how much

fluid is passing from the brain stem and down thru her spinal

cord.... indeed the malformation is compressing her spinal cord and

limiting the fluid supply... they also do think that her wetting

accidents are another symptom, but to be sure we have to have a test

done to make sure it is just not an over active bladder. if the test

comes back normal they feel then it is caused from the malformation.

the dr is sending her case to the chief nurosurgeon who is also a

chiari malformation expert.... he said that tiffanies case is a very

diffacult case and he wants to make sure this other dr agrees with

all the findings. tiffanies case is diffacult for a few reasons but

mostly they are worrie about infection from surgery due to her being

on the remicade and having a low immune system.

after we do the baldder test we meet with both brain dr's and at that

time we will be schedualing her to have brain surgery. they will go

in.... they will remove some bone and some of the extra brain she has

that is compressing the cord.... they will then sew her up and she

will hopfully be fixed.

when you decide to become a parent; you think about the

responcabulity that you have and decitions you will make. private

school, or public, red bike or blue, right vs wrong... ect... but you

just can never really be ready to say ok; cut open my babies head

take out some of the bones that are suppose to be there... then

remove some of her brain sew her up and send her home.... i sit here

thinking did i really just make that choice?? why tiffanie? why now?

why at all???? when did it go from a simple headache to cutting open

her brain??? and mostly am i doing the right thing?? will she hate me

later? will she be the same tiffanie after?

but i am sure that everything will somehow turn out ok... this is a

bit more long winded then i planed, sorry. just very emotional right

now

Tiffanie age 4 systemic

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