Wow, what a year it has been. Learning about my CHD and then the diagnosis of FPIES and a possibility of MCAS, has kept us on our toes and in and out of hospitals since the very beginning. Through it all though, I’ve grown into a handsome little man. I am 13months old now, I weigh about 17lbs 9oz today (only on the 2% chart but it’s muuuch better than it was before… more of that later).
After my last update here, a lot has happened. I spent most of the summer in hospital, trying to figure out what was wrong with me. A week long stay in early August finally made us realize how bad things were. I wasn’t gaining weight, I was diagnosed as Failure To Thrive and Malnutrition. They started me on a specialized formula on August 1st called Puramino, to supplement me on top of my breastfeeds. That wasnt so bad, but I still don’t handle it properly 100% like I should. It makes me have bad reflux all the time. My mama isn’t too happy about that but without it, I don’t grow.
After that, we tried many many different foods and they were all big fails for me with diarrhea or vomiting. I still can’t eat anything at 13mo. I am so hungry!! Mommy says it makes her cry to see me like this. But I am such a champ through it all. I smile at everyone and like to play with my brothers no matter what state I am in.
In early september, we finally saw Dr.A again for our 6mo cardio follow up. Nothing has changed since March. Things are all the same. My aorta is a big more enlarged and my PDA still not closed up, bu they weren’t worried and said we could now go with yearly appointments. So I dont go back to see Dr.A until next september or unless new symptoms appear.
We are focusing on my feeding and allergy issues now. To read more about that, go to my FPIES blog at Micah’s FPIES Life.
But to make a short version… Every bad reaction had sent us straight to the ER with vomit to shock reactions. I was lifeless in mommy’s arms after trying hemp seed milk in July. That was very scary for all of us. We now have a plan to call 911 as soon as any vomiting happens. Today is day 2 of a Moose meat trial and mommy thinks I’m starting to react. This is not looking good…
Oh I will leave you with pictures of the past few months: