Chuffy update...Chuffdate?

We went to Mt. Sinai in March an met with famed Dr. Nowak. We found out Chuffy was anemic (his level was 4), and had low vitamin D. They did some prick testing. They tested 19 foods and he had no reactions (other than the baseline one they said everyone reacts to). He didn't react to rice or pears or apples which we knew were triggers. Oh well, that test was a bust.

We were given a list of foods to try starting with carrots. He had no safe foods at the time. While at Mt. Sinai we met with an allergist who helped answer any questions we had. We were also told we would do an in-hospital oral food trial of wheat when he turns one. How scary is that?!?

We went home and tried carrots. After a 2 week trial and a 3 day break we found our very first safe food! Whoo hoo!

Then we tried white potato, and had our second success! WHOO HOO!!!

Next we tried bananas because Chuffy didn't like potatoes and we thought we could skip ahead down the list and try something sweet a kid would like. Then we could mix potatoes with bananas to sweeten them up. He loved bananas. Adored them, actually. He ate puréed and freeze dried pieces (his first real solid food EVER). Day 15 brought a fail. Ugh. Nothing too major, but it was devastating. He seemed to be doing so well and he loved them. I thought a fail was coming because he was really refluxy and got the allergy ring diaper rash. The night I found the rash he projectile vomited once, screamed for 45 minutes, threw up again and was fine. He had cold-like symptoms for about a week wich could have been our first clue. I remember reading something like "3 symptoms = a fail" on an FPIES page.

Well, 1) stuffy nose/ cold 2) allergy ring rash 3) projectile vomit 4) reflux

So even if it *was* just a cold, he still had 3 signs of a fail.

I am nervous about what to try next. Dr, Nowak suggested sweet potatoes then butternut squash, but I am contemplating quinoa. I really don't know what to do. I just get so frustrated because I want to be able to feed him whatever we eat. I want him to be able to sit with us at a restaurant and nibble on bread or puffs, or a teething biscuit while we eat. I want him to have a cake for his birthday and not puréed carrots and mashed potatoes. I want him to be able to be just like all of the other kids. I want to be able to put him down to crawl without the fear of food crumbs. FPIES really is a painstakingly slow process. I know we will get through it eventually, but it is just so darn hard.