HELP

[Guest guest]

I just wanted to give you a quick(hopefully) run down of a day of my life and

see if anyone has any suggestions.. I have a 20 month old daughter who has

SID.She was diagnosed at 11 months and has been in therapy ever since.She has

a st,ot,di,and a nutritionist. She has been failure to thrive since she was

about 9 months old. She was hospitalized for failure to thrive and they were

going to do a feding tube but the surgeons refused to do it under the

recommendation of 4 other doctors. All of her therapists are completely

puzzled by her.Every thing we have done for her has failed.She is not

responding to the therapy. She has extreme oral defensiveness.As soon as she

sees food in front of her she throws herself on the floor and starts

screaming. I breastfed her every 2 hours around the clock until a month

ago.She will eat very limited things and in very small quantities.All of it

is basically crap for a lack of a better word.She NEVER sleeps.Even as an

infant she hardly ever took naps. She screams and cries the majority of the

day. I am sleep deprived,dealing with a screaming child all day and everytime

I try to feed her is is a battle.She also has speech delay. I am going

insane.I don't know what to do any more.I guess this is more ranting and

rambling then a help question.I don't really enjoy my child anymore.I love

her but there is nothing to enjoy about her anymore.I just don't know what to

do anymore.I guess if I had more sleep then it would be easier to try and

figure things out.Thanks for reading...ne