Friday, March 29, 2013

Our new enemy, Mr. Milk

After getting Mateo's biopsy results and his EE dianosis,we were sent to the lab for a blood draw to check for food allergies. It's pretty sad when a 4 year old holds his arm out to be poked. He didnt even scream or freak out. He is getting used to it. :(

We waited close to a week and I got another mychart message from the GI,Dr. Terry. She said he only tested allergic to one thing, and it was indeed milk. I really was hoping, crossing fingers and toes, praying, begging for it to not be milk.

This is a HUGE change for us. He is very, EXTREMELY limited to what he can eat at restaurants now. And at home, I'm having to relearn to grocery shop, spending more money, and learning how to prepare meals for him. It breaks my heart that I have to limit him so much. But after researching, asking friends, shopping.. I have found some good stuff... So far I've made dairy free pancakes ( bisquick with egg and soy milk), got him dairy free bread, margarine, soy yogurt, vegan cheese, dairy free snacks... It's been crazy. He can't have simple things like a lunchable anymore. The meat, cheese and crackers ALL have dairy... Chips have milk in them... But tonight he was a happy camper. He made his very own pizza, gluten free/dairy free crust, vegan cheese and black olive. He ate half of the pizza.. And he said it was good! :) It's going to take us both some time, but we'll get it figured out!

The hardest thing for me is how I don't have complete control over Mateo's diet. He goes to my aunts house during the day while I work ( along with his sister Aneli). I worry that he might accidentally get given or fed something with Dairy. Or when he goes with grandma. Grandma's like to spoil their grandkids, and she has been known to sneak him some sugar once in a while... I wish everyone would take his conditions seriously. It' s not like we limit or restrict him for fun... It's for a purpose, his health!! It's frustrating when people give him things he's not supposed to have. Then he knows what he's missing, he expects it again, or worse, it causes issues with his health and/or comfort. Then it affects his sister and myself...

This diagnosis has really hit us all by suprise, and it's very stressful now. I look forward to the day that it just clicks, and we "get it". I remember the day I heard "hirschsprungs disease"... I thought we'd never be able to deal with it, and here we are! I know we can do this too,I just hope its smooth!

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