Grace has moderate diplegia cerebral palsy, acute Food Protein-Induced Enterocolitis Syndrome (F-PIES) to dairy & soy, sensory processing disorder and generalized anxiety disorder. She is limited in the foods she can eat and is still dependant on medical amino based formula for the majority of her daily calories. We spent May & June 2013 at Our Children's House at Baylor Dallas in the inpatient feeding program. Grace and I worked with a team of OT's, PT's, ST feeding specialists, a pediatrician, awesome nurses, a psychologist and a social worker to try and teach Grace to eat table foods. She made some progress considering when we went in she only ate about 5 foods, but her volume of intake has been horrible. We continue feeding therapy three times a week as an outpatient and while we were increasing the variety of foods she was not eating more than 16 bites/swallows in a meal and was not getting enough calories.
In January our awesome speech therapist went to a training on pediatric feeding disorders and diseases. One of the diseases they covered that day was Eosinophilic Esophagitis (EoE). When we came in for therapy that next Tuesday she told me about the conference and how the entire time that they were going over EoE she was thinking "that is Grace!" She asked me for permission to contact Grace's GI doctor. I agreed and after a phone conference and some research they both agreed she needed to be scoped. My husband and I agreed hoping to rule out that she did not have EoE. When our GI came into the room before the scope I asked her, "What happens IF she has this?" She told me we were going to pray she did not have EoE and we were not going there unnecessarily. When she walked into the consult room after the scope and I saw the color pictures in her hand and saw the red irritation, swelling and bleeding I started crying. She didn't have to say a word. I knew. She went through the pictures and told us she was so sorry. She took 8 biopsies and those are what will give us the official diagnosis when we meet on Thursday, March 21. She did mention the elimination diet and I have looked at that. Grace loves peanut butter and that is on the list of things to eliminate. I don't even want to go there yet. It just stings my Mama heart. I mean how much can one little girl be burdened with?
Thank you all for your love and prayers. Please keep them coming as we figure out how to navigate life and these new challenges and find joy in the journey. Leaving you with a picture of our girl waiting to be taken back.
To learn more about FPIES go to: http://fpiesfoundation.org/
To learn more about EoE go to: http://www.eosinophilicesophagitishome.org/
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