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Make an on-line slide show at www.OneTrueMedia.com .. I am the mother of two beautiful girls, Katelyn 5, and Gracie 2. I also have two great step kids, Dylan 7 and Makenna 4. I am married to a wonderful man named Shawn and my life is better than ever before. I've somehow been lucky enough to surround myself with the best and most caring group of friends and I feel very blessed to have them.My beautiful daughters and I all suffer from a urea cycle disorder called otc. The basic plot of it is that the liver is lacking the enzyme that breaks down protien. Without that enzyme or special medication your body will not rid itself of any protien and the protien will then turn into ammonia and start to poison your body. My daughter Katelyn had her first episode when she was four months old, I had no idea what was wrong with her and either did the doctors. She was airlifted to Riley Childrens Hospital where a very wonderful woman, Dr. Rebecca S. Wappner (God Rest Her soul) met us and saved her life. She was in a coma for a week, and they told me that IF she made it she would be completely brain dead. Today she is a very happy and healthy five year old, although she only functions at about a six month old level on most things she does love, laugh, cry, and communicate with us in her own way. Im so glad to have her in my life, she is so amazing and so strong. When I found out I was pregnant with Gracie I had an amnio to find out if she to would be affected, I recieved a phone call informing me that she did in fact have the disorder and also that I too have the disorder. It was upsetting but otc affects are treatable with a special diet so I still had high hopes that she would be fine. Right from birth she had high ammonia levels and was airlifted to Rileys where again Dr. Wappner saved my child life. For Five months Gracies symptoms were controlled and then one day she started to vomit and I took her to the er, her ammonia was 425, a normal ammonia is to be no higher than 80. We went back to Riley for a month, got everything under control and thank God we avoided brain damage. This is when we decided to do a Liver transplant with Gracie, its the only cure at this time. Three months later we got the call at three oclock in the morning on valentines day. We rushed to the er at Rileys and put Gracie through a battery of pre transplant test and before I was ready a nurse came in to take her. That was the most heartwrenching moment, I was so scared, and too see her little eyes begging for me why they carried her away was so hard. She came through the transplant like a champ and we took her home three weeks later. We were only home for one day when we knew something was wrong, so back to Riley we went and it was then that I found out that her kidneys had shut down and that her lungs were completely filled with fluid. I was told that she had coded three times and they didnt think she would make it. By some grace of God she suddenly started to respond to meds and after another month of up and downs she came home for good. She is now walking, talking, and causing all kinds of trouble. I love it! I have to thank God every day for not taking my babies. Its the worse pain Ive ever felt. For some reason he thought me worthy enough to raise these beautiful girls...My husband and I feel more than blessed.                    found this love layout at HOT FreeLayouts.com :: MyHotComments
