Grace Rose

Grace Rose

Age 4

Ht. 30 in

Wt. 25 lbs

I was born five weeks early because my mom ran out of amniotic fluid. I weighed 3 lbs 2oz and was 14in long. I was in the NICU on a ventilator for 3 days but never required oxygen. I spent a total of 5 weeks in the NICU but mainly so I could grow and learn to maintain my body temperature.  It was noticed that I had stiff joints in my elbows, shoulders and knees but everyone thought this was due to the lack of amniotic fluid. I was also found to have immature cataracts at birth that were closely monitored by a doctor in Ft Worth.

I had my first cataract removed at 5 months of age and have had a total of 6 eye surgeries.  I still have to wear glasses because I have small optic nerves and am near sighted. At 6 months of age I got a virus and decided to stop eating. It was at this point my pediatrician decided something was wrong and ran some metabolic and genetic testing which all came back negative. She sent me to Dallas Children’s Hospital for further evaluation. They decided the only thing wrong with me is that I had developed an oral aversion and put in a NG tube until I decided to eat again. One month later I started with more reflux and never kept my food down so I continued  to gain weight very slowly.

At one year of age my mom decided I was not going to eat a sufficient amount of food and decided I needed a G-tube so I had surgery and they also did a fundoplication to prevent the reflux. After that I really put on the pounds since I wasn’t refluxing anymore. I eat small portions of food by mouth but I don’t like it. My mom says its good for me so I try to eat for her. I get most of my calories through my G-tube and we have to watch that I don’t gain too much weight.

I am a very loving child and love to be cuddled while being read books or singing. I don’t like a lot of people making a fuss over me or large crowds. My favorite toy is my Moo Cow and I love toys that light up and make noise. I also love my activity mat and swing. I love to go for walks and golf cart rides and doing anything outside. My mom keeps sunscreen on me all the time so I don’t burn.  My most favorite movies are Teletubbies , Barney, and Mickey Mouse Clubhouse.

I don’t like any kind of therapy and fuss anytime I think I am working hard. My mom says I am a “lazy child” and would rather have someone do everything for me.  I sleep with my mommy and daddy and someone has to hug me all night or I get mad. Some people call me spoiled rotten  but my mom says each moment she has with me is a gift to treasure.

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