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

We tried eggs one more time. The big boys were having eggs for breakfast and Carter was literally crying for eggs of his own. His rash had cleared up, so I went with it. I gave him one scrambled egg.  He munched it right up. Within an hour, he had a new area of fresh rash on his shoulder and a small rash around his face. That was our confirmation that eggs alone were not going to be a part of Carter’s diet.  But what about eggs cooked foods?

The next day I gave him a waffle. They were Carter safe waffles made with corn starch and eggs.  The small rash around his face turned into a larger welt and spread to his cheek. Eggs are, were officially a no go. The strangest part of all this involved his patch testing. In January of this year, Carter had patch testing done. One of the patches was eggs. I looked at his back on Friday while getting him changed and the area where the egg patch had been placed was raised and discolored.  It was a prefect little circle. The patch testing was done 7 months ago and yet his skin still reacted. This tells me that his body still has a lot more healing to do.

We took the whole family camping over the weekend and learned two very important things.

1)     Carter gets car sick. Vomit does not clean off of a cast. Pukie is Carter’s word for throwing up. Always pack extra clothes in case someone vomits twice in 10 minutes.

2)     Carter cannot cheat on his diet. No matter how much he begs, we cannot give in. He cried for watermelon. It is on his list of Maybe foods.  After 4 small pieces, we had reactive diapers for the next 2 days and disturbed sleep. Watermelon will now go on the Unsafe list.

Camping was a great adventure and we all had a great time! Every family outing is a learning experience and if we do it right, it is also a time to smile and watch our boys be boys.

Hello Rash. Bye Bye Eggs.

Eggs. Today is day seven of eggs. Well it should be day 7, but I had to pull them this morning. On the first day that Carter tried the eggs, he got a small red raised bumpy rash on the back of his neck. I thought for sure it was heat rash since he had just gotten the cast on 2 days earlier. Each day the rash got worse, until yesterday when it covered his neck up into his hair, down his back, across his neck and over his shoulders onto his chest. They were now starting to look like little pimples. I noticed several on his bottom as well. He also had a runny nose and loose, slightly acidic diapers. I was really hoping that it was just an adjustment to the cast and the pain that his body was experiencing from the break.  I was even hopeful that the rash was a simple heat rash or even a reaction to the cast material.

Sadly, it seems to be the worst of the possibilities, the one thing I wanted so much for him. The food I wanted him to pass so badly. These were the safe eggs. The ones with no soy, no grain, no contamination. I really thought the reactions we saw all those months ago were from the feed given to the chickens. It appears I was wrong. Which leads me to another question: Does that mean that the reaction he had to the chicken had nothing to do with the feed? Does this mean that he will never be able to eat meat? Does this mean that regardless of the source, all meat proteins will cause problems?

3 Doctors

We have had 3 doctors’ appointments this week, and all of them went well!! We had the speech evaluation and they also did a full evaluation to look for any developmental delay. He showed normal development in all areas expect his verbalization. In that area he is only 4 months behind, which is pretty good considering all he has been through. Even though he has a delay in speech, it is not enough to qualify for treatment. I am not worried about it though. He has made great strides in the last month and once he enters preschool in August, I am sure his language will blossom even more!

Carter also had his well baby visit yesterday and he’s growing well. His weight is still at the 24% at 26 pounds. His height has really taken off and he’s 35 inches which puts him in the 63%. His pediatrician was really happy with how far he has come. We did have a bit of a comical moment when the doctor tried to find FPIES in the computer system as a diagnosis choice, but it wasn’t there! Guess we are still too new!

We went to see the Orthopedic doctor today to get another X-ray of Carter’s arm. The bone looks great and is healing wonderfully! We will go back next week to get another x-ray to continue to monitor the process of his arm.

It is really nice to get positive feedback from all of these appointments. Carter has started to get used to maneuvering with his cast and has become pretty darn good at using his left hand! Only 5 more weeks!! And then its time to go swimming!!