short gut syndrome

2 years ago my daughter in law gave birth by emergency C-section to a
baby girl, this sweet child was born with a twisted bowel, an emergency
operation when she was just 4 hours old and we were given little hope
that it would be successful, saved her life, we were told they had
removed some 90% of her bowl but that the valves at either end of her
intestines were intac, we were told to take each moment as a gift, she
is now 2 years old she has re written the books on what can be expectd,
she survived the against all odds, thanks to a wonder ful pedeatric
staff, a strong wee spirit, and we are told, the support of a loving
family. We are now at the stage where she can eat many things we thougt
she would never be able to have, she's bright as a button and busy as a
bee, the problem remains however that there will always be a battle
with nutrtion due to malabsorption. This is a long shot, but at the
moment i cant sleep at night, so i'm desperate, it seems she has lost
weight and is very dark under the eyes, you can especially notice it
around her face, I'm very worried, is there anyone out there who has
been through this and has some hints or tips about what we can do next
to ease this particular problem. Doctors and the nutritionalist at the
hospital are out of their league with her because they havn't
experience of this kind of success before so it's all trial and error.
If you can relate or know of a group who can please let me know. We are
told she has along and bright future ahead of her, however we have
concerns that if she is not getting enough of the right nutrients this
can affect her development both intellectually and physically.