Hope you're all having an amazing holiday season.
Sorry it's been so long since I've posted! The ups and downs of the past month have been a little crazy. After Charlene's blood work came back with no irregularities, we ended up going in on November 16th for an endoscopy, flex sig and an ileoscopy. And the results were very good. And while that seems like good news, and it was, we are still sort of up in the air as to what is causing Charlene so many symptoms. We went back for a quick visit to the Dr. on Dec. 9th and I asked him to bring up the pictures from the tests, and also the pathology report. He read through them and said, "It looks like you might have a teeny bit of Crohn's in your upper GI tract, Charlene." I was stunned, and sad, and since then I've been quite troubled.
In the meantime we got three letters from our hospital saying that they, the gastro and the surgeon would no longer take our insurance as of the end of the year. There is a 90 day transition period and you can petition for continued service based on whether or not there is an ongoing treatment plan in the works. At first I was just sort of stunned, and then I got over it. We'll just work with it for this year and next year opt into a different plan which does include our hospital and doctors. It's a more expensive plan, but at least we have a way to continue our care with them. ARGH. Still very frustrating and discouraging.
Meanwhile Charlene still experiences fatigue, nausea at night, some dizziness at times, etc. We'll have to continue to pursue the source of these very Crohn's-like symptoms. Meanwhile I might take her to the doctor in Connecticut who administered the Tysabri to her last winter for a second opinion. On a happier note, Charlene continues to thrive despite her symptoms. She swims four or five nights a week, has a full social life, is an excellent student, and her stoma care seems to be routine and easy, with her flange staying put at for at least two days every time, and usually more.
All of our daughters will be here for the Christmas break as of tomorrow afternoon...Charlene is the youngest of five (our son is married and lives about an hour and half from here. He and his wife will be down Christmas night.) and the girls have SUCH a great time together during the holidays. It makes the house busy, noisy and so much fun. I hate it that kids grow up and move out...I hate it every time one of them leaves for college.
Anyway, I'm very excited about Christmas as we have tons of surprises in the works for the kids (and my shopping is done!). Hope you're all enjoying the season!
Merry Christmas and Happy New Year, everyone!