Sixth grade was tough, and Emma was once again on intermittent homebound. She also had a 504, which allowed her to have certain testing accommodations due to her illness. When she tests, she has extended time, frequent breaks, and a small group environment. This is to allow her to leave and get sick as often as necessary.
Three things were our saving grace this year: 1. The support system offered by our friends, family, and church. 2. Her amazing teachers--they were so understanding and helpful. If it had not been for their willingness to communicate with me and listen to my concerns, I am not sure she could have been so successful this year. It was one thing when we were in the same school building, but it was a lot tougher with her in a totally different school. 3. Sports--without sports, Emma probably would have lost all resolve to persevere.
Emma has played soccer since age four, and she has played basketball for the past several years. This year, she played volleyball, basketball, and then soccer. She spent many days running to the bathroom to throw up and then back to class. She knew if she toughed it out, she would get to play her sports. If she went home, she couldn't play. (Her GI doctor is fully aware of her playing and is supportive as long as she eats and drinks properly.) There were many times that she would be throwing up right until the last moment before a game started. Very few people--including her coaches--even knew she was getting sick because she refused to let them know. Much to her dismay, I did my best to keep them informed. She was always worried they wouldn't play her if they knew she was sick, but this never seemed to happen. One day she even called me from the bathroom at practice. She had diarrhea so severely and such intense pain that she could not even move off of the toilet. Her poor coach did not even realize she was in the bathroom because she slipped away, and she was devastated that Emma was alone while in such pain.
We had a couple of scares this year. She threw up blood twice. Not just a little blood. But a lot. The second time was just days after she had the BRAVO procedure done. The BRAVO is a device that attaches to her esophagus. It is a detailed test for measuring the amount of reflux someone has. (It did show a bit of reflux, but not enough to account for her extreme vomiting.) After a couple of days, it detaches on its own and leaves the body. They scanned her to make sure it was gone. Since it was, they determined that if there was no more bloody vomiting, then it was likely it came from the BRAVO device detaching. (This is extremely rare, but we are good being rare in this house.) She has not thrown up blood again since then.
The last time we saw her GI doctor, he was disappointed with her progress. At one point, he had even sent us to a rheumatologist to have her checked out, since the back pain rarely subsides. The rheumatologist did not feel it was arthritis-related (we have a family history of juvenile rheumatoid) or autoimmune related. He decided to run a few more tests and then possibly refer her to a stomach motility specialist in Ohio.
We set up some procedures to be run as soon as school was out.
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