Home Sweet Home
We are home and all is good. Eden did such a wonderful job on the long boring trip to Philly. Eden and CeCe had a sing along which is always very cute and she played pixter for hours and colored and watched Sponge Bob and Hee Haw. She is so amazing! We drove up to CHOP right at 11:30 and the wonderful nurses were there waiting for us. We have have two nurses that handle the blood draws for the trial and Eden loves to see them and one of them has a sister who is a nurse at Childrens Columbus and told Eden a childhood nickname of her sister so as soon as Eden saw her yesterday she started calling her Cheche Bird. We all got a big laugh out of it and the nurse in Philly in turn gave Eden her sisters nickname, So Eden cant wait to get back to Clinic to share it with all of the other nurses. They all remembered that our last visit was just before the Halloween party and asked it. These people see hundreds of children every month and it is so sweet that they remember specific details about Edens life to talk to her about. There is a wonderful Social worker there named Dana who always stops by to see Eden and they sat and blew bubbles for 20 minutes while waiting for Dr. Mosse and Pat. Dr. Mosse was very pleased at how well Eden looked. She has tons of energy and is feeling great. Eden put Dr. Mosse to the test with a little trick she learned. You sit on a chair and lift your right foot off the floor and turn it clockwise and with your right hand you draw the number 6 in the air while keeping your foot going clockwise. Everytime your foot will change directions and when Dr. Mosse couldn't do it we all had a good laugh.
Dr. Mosse said that of two urine tests done last time we were there that one came back completely normal and the other came back very high indicating large amounts of disease in her body but because it doesn't match anything we are seeing on scans they feel the test was incorrect. She said that something Eden could have eaten that morning could have skewed the test and she wasn't worried about it. The test will be done again from the sample from yesterday and Dr. Mosse said she would email me the results. However, whatever it shows it will not change out plan. Dr. Mosse feels Eden is on the best plan for her at this time. All and All the appointment was very uplifting and I am working hard at not focusing on this one concerning thing. Our lives turn in very vicious cycles with this horrible monster. When things are bad we always know what to expect and there are no suprise or disappointments and all we want is for her to improve and when things are good we constantly worry about when the next shoe will drop and what is coming around the corner when we should be just enjoying the good times. Its a balance I have not yet mastered but getting better at.
Thanks for checking on Eden and don't forget to visit Lunch for Life and visits Eden's giving tree.
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