a bit of acm / sionnan update

[Guest guest]

Sionnans stay for a full month at ucla , is now close to ending ....and they

hope to return home to CT friday , if all these storms cooperate .

Her pain is much better controled now ....the doctor increased her medication

level signifigantly ,...so they arnt sure if its surgical recovery , or

better pain mannagement responable ....but , bottomline , is shes much more

comfortable now ...and the mris done a couple days ago look great ....the

shunt should help keep the intercrainial presure better stabilised ....and

her neurosurgeon holds hope of great improvement over time now .

one disconcerting big , was he gave barbara a different view of what she can

expect that sionnan .....telling sionnan , that the pain should now vannish ,

and she will be able to resume a normal life ....but telling barbara in

private , that yes her understanding was actually right ...and that too much

dammage may have occured this last three years , from the slumping of the

brainstem and cerebellem ect ....that it may have left her permanantly in

severe discomfort , and with other grave consequences as well .

Barbara was dismayed he wasnt as honest with Sionnan , ....but , im chosing

to believe he hoped to help her recover with hope ...knowing that the mind

over matter principal here , may offer a better chance of sucess , than what

she might believe if doom and gloom had been part of his cautions and

discusion of her future .

A truly wonderful suprise ...was the hotel FINALLY getting an accounting to

Barbara .....some list members , were VERY very generous .....and after a

month stay at $75 a night costs ....there is only a $200 ballance ....Barbara

was tearful telling me , saying she was soo astounded and greatful ....she

will be tryng to write each of you individually , but i want you all to know

, we have true angels amoung the members of this acm family ....and some very

bright halos shinning out there !! ( to those of you who quietly took care of

such a big chunk ....im wordless .....a rare thing for me , lol ....but you

know who you are , and you have my eternal gratitude !! )

The suport , cards and assitance with food ,...prayer , medications costs

ect too, ...have ment so very much to them .....again , my deep thanks to

everyone who helped make this chance at improvement happen .....im soo

greatful to you all !

What happened to Sionnan this last few years , since the botched first

surgery , is very very rare ....but once again , the caring and generosity

expressed , has made a huge differance to the lives of this family .

This also serves as a clear demonstration to all of us , we need to be

careful in chosing a neurosurgon , and be very careful to be sure that the

doctor has good debth of experience and understanding .....without wacma and

asap , i fear this would be happening much more often .....so , cyber hugs

and thanks to all who reach out to share experience , and work toward helping

the research and understanding grow ....your one very special family of folks

!!

YOUVE made a huge differance to a sweet young gal ....and have helped her

reach the best care and opertunity to live a full life possible given current

science and medicine .

Im still speachless at all that has been done to help her ..without you all ,

it would not have happened ....THANKYOU from the bottom of my heart .

A bright note to end this year in her life ....is make a wish has granted

Sionnans dream ....and they will be going to a special christmas lodge for a

few days ....when and if i can get the name , ill look for a url to a picture

....its in vermont i think , and is highly decorated and has special christmas

activites such as sleigh rides .....Sionnan has dreamed of doing this ...and

it will be a special way to help her spirits during this recovery and healing

time ahead .

If you have a child with acm or sm ect , do consider contacting them ....dori

and i urged barbara to do so last summer ....and they do grant wishes to our

special kids ....they have done this for several of our family here ..and it

takes little effort to bring this into being .

with great thanks ....and great hope her future will now be brighter .....

sarah in paradise