We had two appointments today. Orthopedics and genetics. Ortho appointment went well. They said the pain is not a structural concern. They see the bursitis and inflammation.
Genetics was a lot of information with a lot of unknowns but at this moment we are going ahead with the gene testing. We should have results in about 12weeks. This is still only testing a fraction of her DNA code. They are only testing the code that they know what to do with. At Nih her DNA was only checked for the genes that cause fevers. We will know be testing a larger percentage of DNA. As the dr put it before you DNA testing only checked for missing pages we are now testing for misspellings within the book. Page by page line by line word by word. Randy and I will be getting our information pulled as well to see if anything inherited is from one of us. This helps gives the analyzers of the DNA a better picture. (Now we wait to get these results).
The X-ray above was taken today for ortho but gives us a good picture of her colon and bowels. Needless to say she is still full and we will be speaking to the surgeon about it Wednesday at her post op surgical appointment. Her cecostomy tube is a huge concern hanging over my head. The thing looks to be pulled away from her skin and has another granuloma. It just is a worry that we can’t seem to escape. The fear of it falling out or being pulled out or getting infected. Her stomach is distended and the guessing game between flushing or venting is always there. She wanted another flush but if I do that then she can’t vent tonight and since her stomach is distended venting needs to happen but a flush might help push the stool. This back and forth game is a never ending cycle and we are in the middle of it.
Just one of those days
Beaming with hope 