What a day... BUT a fantastic day!
We headed to Sydney for James' immunologist checkup. He checks in with James frequently. James has FPIES (Food protein induced entercolitis syndrome). Its a RARE protein allergy that causes vomiting and severe fluro, blood, mucous. It rips the gut lining. James was diagnosed with this when he was 4 months old. It all started with vomiting with Rice cereal, then sweet potato etc etc. It was a very painful time. We had a fail and safe list on our fridge and it had 60 fails and zero safe foods (except neocate gold). As a result of FPIES James developed food aversion. He refused to eat anymore food pretty close to his 2nd birthday, before that he only had 5 things he ate. The foods were green grapes, watermelon, rockmelon, gluten free weetbix and apple puree. His formula supplemented what he was lacking.
James' immunologist and gastroenterologist believe James food refusal is from fear of food and being so sick as a baby. James has been to so many feeding therapists etc and NO ONE can help. We just have to teach him that food isn't going to hurt him. So I will continue to offer food and do food therapy everyday. The good news is that FPIES children outgrow most of their allergies between the ages of 3-5 years old. The immunologist doesn't believe he will outgrow chicken and rice so we aren't go to give him that. As of today the immunologist wants us to give James 20mls of full cream milk in one of his bottles mixed in with his formula and see if there is a reaction, before today that was a no no because they didn't want to tamper with what he knows is safe.
I am so relieved! I get so nervous going to James' specialists. I am not an anxious person but I always get so stressed before these doctors. I really value everything they say and they are truly the best in their fields so I always make sure to be on my A game. I even take like 500 hundred notes to make sure I don't miss something! The immunologist today also put my mind at ease about Medicare. James' prescription formula is $700 for 16 tins (this lasts two weeks). We get it supplied at a much lower cost due to James' issues . The Dr told me that he wouldn't let them not supply it. Its what keeps James alive! Thank GOODNESS!
James and I got home and he was a little unsettled so I left him with daddy and took Scar baby to the shops for groceries. The kids have been bathed, dinner is on. Its almost 5pm and I cant wait to just sit on the couch and chill with my little family!
With a well deserved WINE .... OF COURSE!