Been there, done that, now what?

Its a tough week in the Cole household. After almost a year of testing we've finally made some headway as far as Phill's mysterious illness is concerned. Months of testing and many specialists later we have a preliminary diagnosis. Acute Multiple Protein Allergy. Say what? Thats right, we've heard this before! I feel like I'm at Tufts all over again leaning over Asher's clean room crib, hearing this diagnosis and feeling absolutely confused, devastated, and totally helpless. A year! It took a year.... this information could have helped us take care of our son, help with my prenatal care, prepare us for the caos that ensued right after Asher's birth. Why? Because this type of allergy is actually a genetic problem with the immune system that is almost always passed along if both parents have food allergies and one of those parents has an Acute Multiple Protein Allergy. And of course, it figures.....I have a couple food allergies. And the icing on the cake....its rare, but we're almost garranteed to pass it along to another child. So now for more testing, gene mapping and food trials for Phill and Asher, and for me so we can have all the information we need to make sure that Asher's quality of life isn't affected.

Its funny that Phill has been able to live his whole life with this illness and never have the symptoms that Asher had. I mean he had symptoms. His poor mother listened to him screaming as a baby 23 hours out of the day. Of course the Dr's told it was colic....don't worry about it! Poor Dianne, I really can't imagine not having answers and feeling that kind of helpless. And then of course, there were the awful rashes....dermatologist told them it was exzema....so they tried all sorts of creams and alternatives to soap...that made no difference. And the icicing....the behavior problems....which is what happens when children are always in pain, but are so used to that pain, they don't actually recognize it as pain anymore.

I guess they should consider themselves lucky that he didn't stop breathing. But I really don't think its lucky to suffer a whole childhood thinking...."what the hell is wrong with my kid!?!" and of course "Am I a bad boy?" I'm just grateful I wasn't a mom in 1981 and that my child was born when Doctors didn't brush aside these things and specialists know more about rare and complicated diseases.