Caring for an FPIES baby is hell. Having 2 healthy babies previously, I never understood what parents of sick kids face. #fpies #staystrong

Today's #fpies challenge... 'sample' collection of both varieties! At least it mixes up the feeding issues for a spot of fun! #staystrong

Best news! The babe has gained weight, if we keep this up, tube feeding doesn't become our reality again. Beat that #FPIES

One of the best things about having an #fpies child is that you don't need to worry about variety in their diet. Lamb & oats or lamb & oats

#FPIES parents you are an amazingly creative and strong breed. The way you have to approach nourishment for your child is worthy of awards.

When your child has a rare condition like #fpies there is no simple treatment protocol. Being lab rat today... is it all FPIES or...?

Breaking: Wicked Campers commits to removing misogynistic slogans following 110,000-strong petition by answer me. #peoplepower

We often approach disadvantaged communities with a deficit view. We should look at what they DO have & build programs around that. #ISMC2014

So lovely #fpies families, what is the good that has come from your journey with this Crazy diagnosis? #fpiesau

Stirring photos of life below the poverty line in Troy, New York: slate.me/1l9pkMb

Just saw the bodies of children in the morgue of the main hospital which is so full that they are piling up on the floor. Doesn't get worse

Two recently published articles add to the medical dialogue on #FPIES! facebook.com/photo.php?fbid…

@sarahbessey You articulate exactly what my yesterday was. Humbling, freeing and real. Probably what all preaching should be.

I never thought that at 13 months of age I would be teaching my child to roll over and also use her legs. #FPIES you really are a crazy one.

You know you are an #fpies parent when you casually just cook up lamb cutlets and potatoes for your baby's breakfast. #madeofmoney

You can't shame, impoverish or punish someone into secure employment or positive contribution to society.

The girls are playing 'pass the parcel' with diaper sacks. I call my slack parenting 'montessori' inspired. #tiredandcranky

Any other #fpies parents had their baby diagnosed with reduced hearing?

So #fpies parents, what advice do you wish had been given to you when a diagnosis was given?