G tube feeding heart repair and enzymes

[Guest guest]

My daughter Isabell who will be 3 February 21 was born with a heart

defect and had surgery when she was 3 days old. She has a cadaver

blood vessel grafted from her pulmonary artery to her right ventricle

witch is not alive. Will enzyme therapy affect this cadaver blood

vessel? Second question she has severe oral issues, as in she eats

only when she feels like the moon and stars are aligned just right,

and has had a G tube since 3 months old. How do other parents give

there children enzymes while on continuous feeds over a 13 hour

period of time? She is on Neocate Junior 30 cal per oz, this is a

corn based formula for children with gastro problems, and she has not

had a solid bowel movement since we started it 2 years ago. I don't

mean to graphic but her bowel movements are almost like water. I and

my wife have brought this up to her gastric DR several times and we

always get the same answer " Don't worry its normal " I'll bet the

people here have never herd that phrase before.

I can say that when they diagnosed her with ASD I and my wife were

happy. I know your thinking HAPPY! yes happy that meant that there

was an answer to all the questions, and when you have several DR's

telling you that it's RETT syndrome and she will be like a Vegetable

for the rest of her life or it's this syndrome and she will probley

die by the age of five, at least autism offered some kind of hope. It

made sense the no eye contact, no speech, the hand flapping, constant

vomiting, and getting sick.

Thank you