Hi! My name is Annabelle. Mommy likes to call me Annabelle Grace. And others, especially my big sister Madelynne, like to call me Baby Belle (like the cheese, so she says).
My birthday was September 20th, 2011 - seven weeks sooner than I was expected to arrive. I wanted the world to know from the start that I am a fighter, strong-willed and unpredictable so I felt it best to keep them on their toes right off the bat. While in the NICU, the doctors had a lot of GI concerns so a couple extra specialists came to take a look at me. Finally they all agreed I was beautiful and perfect and I went home to be with my family.
A couple weeks later, my mommy started to notice me having an allergic reaction while I was nursing with her. We did a lot of tests and everyone agreed the safest plan was to move me to a hypo-allergenic, amnio-acid based formula, Elecare. I did great until I tried to start eating real foods.
Eating food began to get tricky. It seemed like I was allergic to a lot of things and had to visit the GI Specialist and Allergist often for tests. Mommy and Daddy kept me on a pretty boring diet but I was still getting sick. I was throwing up and crying a lot. My throat and tummy hurt really bad but I couldn't tell anyone how I felt! I had stopped growing and wasn't gaining any weight. I was also starting to get sick and couldn't get well. Every time I would eat, I would choke and cough really bad - sometimes until I threw up my entire meal. Mommy knew this wasn't only food allergies and took me back to the GI one day, she started crying when he came into our room because she wanted to make me better and could't figure out how. He looked at me for just a couple minutes and decided it was time for a big test!
I have an Eosinophilic Gastrointestinal Disease
Eosinophilic Esophagitis, EoE. Can you say that? Yea, I can't either.
Ee-oh-sin-oh-fil-ick Ee-sigh-fa-gi-tis It takes some practice.
Just like when she took me to a really fun place to play and the nice ladies told my mommy that I needed help speaking because of the EoE damage. I am so happy to have a nice nurse come to my house and help me speak, it's much less frustrating telling my family what I want instead of just crying.
The hardest part of my special disease is that I look perfectly adorable, happy and healthy on the outside. Mommy makes sure of it because she may, or may not, have an eye for super cute girls clothes for sissy and I, and we are always dressed to perfection! But just because I am adorable on the outside does not mean I am not very sick on the inside. This makes a lot of people question whether or not I am really sick and it makes it really really hard for mommy and daddy to judge if my symptoms are flaring/relapsing. It's quite a roller coaster living with EoE but we won't let it define us, never ever.
My birthday was September 20th, 2011 - seven weeks sooner than I was expected to arrive. I wanted the world to know from the start that I am a fighter, strong-willed and unpredictable so I felt it best to keep them on their toes right off the bat. While in the NICU, the doctors had a lot of GI concerns so a couple extra specialists came to take a look at me. Finally they all agreed I was beautiful and perfect and I went home to be with my family.
A couple weeks later, my mommy started to notice me having an allergic reaction while I was nursing with her. We did a lot of tests and everyone agreed the safest plan was to move me to a hypo-allergenic, amnio-acid based formula, Elecare. I did great until I tried to start eating real foods.
Eating food began to get tricky. It seemed like I was allergic to a lot of things and had to visit the GI Specialist and Allergist often for tests. Mommy and Daddy kept me on a pretty boring diet but I was still getting sick. I was throwing up and crying a lot. My throat and tummy hurt really bad but I couldn't tell anyone how I felt! I had stopped growing and wasn't gaining any weight. I was also starting to get sick and couldn't get well. Every time I would eat, I would choke and cough really bad - sometimes until I threw up my entire meal. Mommy knew this wasn't only food allergies and took me back to the GI one day, she started crying when he came into our room because she wanted to make me better and could't figure out how. He looked at me for just a couple minutes and decided it was time for a big test!
March 25th, 2013 was a snowy Monday and the day for my big test. Dr. Villalona performed an Upper Endoscopy and took some samples of my insides to test for a couple different things. Thursday morning he called mommy with the news.
I have an Eosinophilic Gastrointestinal Disease
Ee-oh-sin-oh-fil-ick Ee-sigh-fa-gi-tis It takes some practice.
I also have: Gastroesophageal Reflux Disease (GERD). Gastritis. Failure to Thrive. Low Tone. Food, Seasonal and Drug Allergies. Food Intolerances. Chronic Bronchiolitis. Allergic Rhinitis. Eczema.
It means that I have an auto-immune disorder that see's any foods or substances that pass thru my esophagus, as enemies and it attacks them. It can be food, drink, medications or even the air that sets off the Eosinophils to attack. This makes me very sick. My throat & tummy develop really bad sores that bleed and hurt. My esophagus also develops rings that tighten and begin to close, not letting food to pass to my stomach. This makes me cough and choke on a lot of things. The EoE also keeps me from gaining weight or absorbing food like most kids which makes me feel weak, tired and my bones ache.
There is no cure for this ugly disease but there are a lot of treatment options and I know my mommy and daddy will chose the best things for me. Mommy will only let the best doctors take care of me and always makes sure we are doing what is best!
Just like when she took me to a really fun place to play and the nice ladies told my mommy that I needed help speaking because of the EoE damage. I am so happy to have a nice nurse come to my house and help me speak, it's much less frustrating telling my family what I want instead of just crying.
The hardest part of my special disease is that I look perfectly adorable, happy and healthy on the outside. Mommy makes sure of it because she may, or may not, have an eye for super cute girls clothes for sissy and I, and we are always dressed to perfection! But just because I am adorable on the outside does not mean I am not very sick on the inside. This makes a lot of people question whether or not I am really sick and it makes it really really hard for mommy and daddy to judge if my symptoms are flaring/relapsing. It's quite a roller coaster living with EoE but we won't let it define us, never ever.
I am a very special little girl. I love to laugh and play, I love to steal my sisters toys and run away and then come back to sit in her lap and read a book together. I am very spontaneous and LOVE to surprise people with hugs and kisses for no reason. I like to be held and cuddled. Bath time and being outside are my favorite places to be. I am very loud and proud of it! I have a smile that is contagious and the best belly laugh you will ever hear.
I am Super Baby Belle and I suffer from Eosinophilic Esophagitis, but I also have the best family and friends and support group cheering me on and I love them all so much!
-Annabelle Grace
-Annabelle Grace
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