Emma is a 9 year old girl. She has 3 different heart diseases celiac disease and iga deficiency. She Let me tell you a little about my baby. She was beautiful.
Her name is Emma-Leigh Grace and Was born Jan. 31 2008. She looked healthy. She gained weight and was growing fine. but i still had a gut feeling something wasn't right. I'm sure people thought i was crazy. One day Emma got sick, so i took her to the doctor. The doctor said she just had a cold but said her heart was beating to fast. She didn't seemed to worried about it so told me to give her breathing treatments. So I did and went back to the doctor about a week and the doctor said she was fine so i trusted the doctor. That was 1st sign i missed about her heart. When she was about 2 Years old I took her to the ER for something and he said that her heart sounded funny but he to wasn't to worried sign #2 i missed. At the age of 3 i took her for a well check at a new doctor and he said her heart sounded like she still had a heart murmur. he said it wasnt common at her age to have one so he sent us to a heart doctor. and they confermed it she had a type of heart disease (ASD) which is holes in her heart. So I desided it would be best to do the surgery now rather than later. So Sept. 8th of 2011 she had open heart surgery. I'm glad I went ahead and had it done now rather than later because come to find out she had 2 holes in her heart and a returning vein that was suppose to return blood back to the heart dumping blood in her lungs. that i didnt know till after the surgery. Emma was in the hospital for 3 days. We went home Sept. 11. she healed great soon was back to her crazy goofy self. but something still wasnt right. she had had diarrhea for almost her whole life. i would take her to doctors and they would just give her meds. nothing they did helped her. but we went to the doctor that sent us to the heart doctor and he sent emma for some more testing and and waiting for the phone call seemed like for ever. finally the nurse called me and said that the testing came back and she has celiac disease. my world came falling down. How was i going to learn everything she can and cant have? what if she eats something? what if she plays with something? A lot of what ifs. but i didnt know ordering food out would be hard I would get dirty looks like Ive made emma a picky eatter or the big one they give her dirty look, i even had one person tell me if she doest like the bread just to take it off. celiac doesnt work that way. so i would have to have them throw food away and redo it. it saddens me when we are out.
17/10/2024
It’s that time again to start getting gifts for assisted living for Christmas link in comments.
30/07/2024
I’ve seen vision boards but I want something that can go everywhere with me.
23/06/2024
I’m walking for Oma. She was such a big part of my life. This is my way to honor her.
I am participating in Walk to End Alzheimer's. Donate today and help me reach my goal.
29/05/2024
Emma is going to London and Paris next year. Here’s a link to donate to help get her there.
We are pleased to announce that we have returned to the platform after a long absence. Our daughter Emma is now 16 years old and enrolled in high school. Our hiatus was due to the demands of work and personal life, but we are eager to continue sharing our experiences with you.
14/04/2024
Still very thankful for all that donated we still have a ways to go and could use your help.
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