3weeks, 3 breaks. An Update

A lot has happened in the last 3 weeks. I was just beginning to think that things had leveled out around here. I should know better. I start thinking like that and BAM! Life decides to shake things up a bit!

We finally got our long awaited results back from New Jersey. They showed some promise that his body is learning to develop mechanisms to fight FPIES, at least for Soy. It doesn’t mean that he won’t have a reaction to Soy and it doesn’t guarantee that he will outgrow it, but it does tell us that someday his severity may not be as bad.  It also showed that his reactions to Milk and Wheat were much worse that I realized. It has started a fire within me to eliminate Soy, Dairy and Gluten from our lives. It will not be an easy task, but our home needs to be a true Safe Haven for Carter.

We had an accidental run in with rice. I bought Carter some Coconut yogurt, a food that I knew to be safe. I made the mistake of not double checking the ingredient list. He ate half a cup for dinner. He had disturbed sleep that night and a nasty green acidic diaper full of undigested food. Yuck, I know. It shocked me back into the FPIES reality that I thought we had so far, gained some real control. I picked up the yogurt container and there on the ingredient list was Rice Starch. The last time we encountered rice was a year ago, by way of rice milk. It was a pretty obvious and quick fail and we haven’t touched rice since. I always wondered whether Rice was really a trigger food. We got our answer. Rice will go on the list of Untouchables. Just one more thing to avoid! So now we add Rice to the list of foods that need to find their way out of our home.

We also decided that it was time to try putting all three boys in the same room.  The big boys have shared a room for over 2 years and have been eagerly awaiting Carter to join in the nightly slumber party. We moved Carter’s crib into the Big Boy’s room a week ago.  It was a little rough in the beginning. Carter tried to get his brothers to play with him and it took over an hour and a half for him to finally give up. The nights started to get better and then . . .

Wednesday we took the boys to the park. Carter wanted to go down the BIG BIG slide.  He loves slides! He started out just fine, but then fear set in, he put his foot out to stop himself and it caused his body to jolt forward. He extended his arm to catch himself and I watched it buckle underneath him. When I picked him up, he was terrified. There was a bump on his head, but he looked alright otherwise. It was 2:30 and he hadn’t had a nap all day. We put him in the car and then put him down for a nap. He woke up at 4 and I knew something wasn’t right. He just stood there and cried. I immediately thought food and mentally ran through everything he’d eaten or been exposed to, with FPIES you always think food first.  He sat in my lap and cried. I couldn’t think of anything he had eaten that would cause such upset.  So we started a full body evaluation. Bending and pressing on all parts of his body to find the cause for the pain. I bent his right wrist forward and he screamed. I pressed against his arm which brought on more tears and screaming. His lack of verbalization makes isolating pain tricky. It was an emotional time for all of us, big boys included. We compared the right arm to the left and it was considerably swollen. 4 hours and an ER trip later; we had a splint and x-rays to confirm a broken arm. We had to wait until the next day, Thursday, to get a cast. They wanted to wait for the swelling to go down. A visit to the Orthopedic doctor brought a Camo cast past the elbow and an explanation that he had broken it in 3 places, both long bones in his right arm. We will now see them once a week for follow up x rays to check on the healing progress.

There has been a question of his bone density, but that will be brought up with the pediatrician next week. Carter also has a speech evaluation next week as well. And through it all, he has remained all smiles. He gets a little frustrated with the loss of independence, but we are all working to help him stay strong because it is his strength that strengthens us.