This week is National Eosinophilic Awareness Week! Grace's #1 health issue right now is her eosinophilic esophagitis. People often times look at me like a loon when I tell them this is what she has. Eosino? What??
We are thankful for groups like APFED that are raising funds for research and educating medical professionals and others on what eosinophilic disorders are. There is currently NO CURE for these disorders. If you can give, please give. If you can educate others, please educate them. I have learned a long this journey that when you describe it as an "allergy" people want to tell you a horror story about food allergies or they want to tell you about their cousin's sister-in-law's nephew that out grew his food allergy or they tell you how they have an intolerance. This is very different from all of those scenarios. EoE will be a part of Grace's life forever. There is currently NO CURE for these disorders. The foods she loses or that are removed are out of her diet forever. This has been hard for her, even at 4 years old. She has never really been able to enjoy a "normal" diet as she has been having feeding and food issues since she was 24 hours old. One of her loves this past year has been coconut milk. She loves coconut yogurt, coconut milk and coconut ice cream. I have been cooking in coconut oil and using it to make everything from sauces to "buttercream" frosting. In March all coconut was removed from her diet. She was heartbroken. It really was a preferred food and on days when she didn't want anything else she would usually eat a cup of raspberry or chocolate coconut yogurt. On Sunday evening Daddy took Grace to the snow cone stand for a treat. Snow cones are safe at one stand in our town and boy are we thankful for that! She always picks the Frozen Snow cone. We all thought it was because of her love for the movie Frozen. On Sunday she told 827 that it was because the cone was white coconut and blue coconut flavor and she misses coconut. I have to admit this Mama cried when I heard that.
Grace still isn't feeling 100% although we know the change in medicine has made a BIG difference for her. She is perking up and her reflux has been under much better control. If we can just get her eating well regularly we will be back on track. Tomorrow she has another scope and biopsies all the way through her GI system. Our new doctor is looking for answers and a EoE status update. We are praying for good results. Elevated numbers will mean we are back to the allergist and she looses more foods. Gator gets to go back to the procedure room and stay with her even when 827 and I get sent to the waiting room. I know he will take good care of my girl. I am so thankful we were blessed with him. Pray for a calm morning and the procedure to go smoothly please. Want to know what Grace is so excited about for being in the hospital?
She loves these Blue Bell Rainbow Popsicles. Sadly they only have 35 calories a piece. LOL. In town I can only find the mini ones. The hospital has the "BIG rainbow popsicles!" Whatever it takes, right?
We are SO EXCITED that it is finally warm enough to swim! We have been swimming every day! Grace loves her new Ariel swimsuit. She says the pool is a "big hermaid ocean" (big mermaid ocean) and she swims all over the pool - even in the deep end! Swimming is such good therapy for her OT & PT. We will be in the pool as much as possible until school starts!
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