Tummy

I was making dinner last night and the Caleb was sitting across from me at the island eating some carrots. Carter climbed up into the other stool and asked for a snack.  As he was munching on some sweet potato chips, Caleb asked me if Carter could have a carrot. I explained, once again, that carrots aren’t safe for his little brother. Carter turned to me and said, “No. Tummy.” I dropped my spoon. Carter has never said anything about foods not being safe for him, although I seem to be constantly telling him that foods aren’t safe.

I asked Carter if he could eat the food sitting on the counter. “No. Me. Tummy,” he said again and pointed his little finger at all the food I was using to make dinner.  It was a bittersweet moment for me. My eyes were filled with tears as I hugged my littlest man. He has finally made the connection that some foods aren’t good for him.  In a way, I felt relieved. He knew that this was unsafe food for him. We have worked for months to get him to understand that we were not withholding food to be mean, but rather to keep him safe. Even now, I get teary eyed. This was such a milestone moment for us and one more positive step to keep his tummy safe.

FPIES or 2??

FPIES or 2? This is our newest battle. New behaviors pop up and it has become so hard to tell whether they are developmentally appropriate or a sign that FPIES is at work. When do I worry and when do I let it go? When do I correct the behavior and when do I cuddle it? These are behaviors that are not normal for Carter. We saw a lot of these as a result of internal pain that he wasn’t able to express. Maybe now he’s just experimenting with self expression.

·         Screaming

·         Hitting

·         Randomly saying “Owwie”

·         Constantly saying “No”

·         Refusal to sleep

·         Laying on the floor curled up in a ball

·         Not wanting to eat

·         Wanting to have his blankie and bapee (pacifier) constantly

·         Being Argumentative

·         Needing my full attention

·         Violent and Random mood swings

These could all be the actions of a 2year old trying to figure out his world and find his place in it. They could also be signs that there is something happening internally. Am I setting up a future filled with up hill battles because I am not being firm enough or consistent enough? Perhaps. Should I know the difference between a 2 year old tantrum and cries of pain? Probably.  But my mommy instinct is tired and I can no longer view Carter’s world without my FPIES glasses on. It is a part of him and I cannot separate the two. He is growing in spite of FPIES.  He is happy despite his FPIES. It is always there, and maybe I should be strong enough to separate the two, but maybe it just isn’t worth it.

Everyday, Carter says a new word. Everyday he shows us something new about himself. He’s even showing interest in potty training and telling us when he needs a diaper change. He has come so far in the last month.  In spite. Despite. Because of.  With.  And that is what truly matters.

Cast is Gone!!!!

The cast is gone!! Carter went back to the doctor for a check up x-ray on his arm and a new cast, since he threw up all over the other one.  Well, after less than 3 weeks, the Doctor said Carter’s looked great and he didn’t need the cast anymore!! It was perfect timing because we were headed to the beach for 7 days and casts and sand don’t mix! Carter was so happy to have his arm back. It was no longer the boo boo arm!

We spent 7 wonderful days at the beach, enjoying the coastal air, Nana and Papa and all the family memories that we will cherish forever. Carter got to dig in the sand and jump in the waves. He became such a BOY over that week. He left as a toddler, maybe even a little on the baby side, and he came home a BOY. Independent, Stubborn, Determined. No longer content to watch life from the sidelines, he must be in the action.

And in case you were wondering, there is no fear of slides. That little man ran right over to the first slide he could find at the park all by himself. WHEEEEE!!!!

FPIES and Good Morning America

FPIES awareness is happening, today!! A story just aired this morning on Good Morning America about another little boy, Landon, who also has FPIES. It is a great piece and it really shows the struggles that both the families and the child deal with everyday. I would like to extend a big thank you to Fallon and her family for pushing through and helping to show the rest of the world what goes on in our house everyday.

Carter was so excited while he watched. He sat on my lap and pointed to the screen saying "More baby like me". He was clapping when he saw the blueberries and strawberries. Please take 5 minutes and watch this video.

Parents Limit Child to Less Than 10 Foods Due to Rare Allergy Video - ABC News