This blog has been a bit neglected. It's pretty much just been here as a dumping ground, and I don't seem to visit unless something new is happening with Haley. Pretty much it's been more of the same for her. The good news is that the medication she has been on is still working. She sees her rheumatologist next week and he'll be letting us know what will happen next in that respect. Hopefully, he's found a few other pediatric Sjogren's patients somewhere that he could get a little more treatment information from. The thought of her on Prednisone for too much longer. It's pretty scary stuff. We'll see.
Yesterday was a visit to Shriner's Hospital. You all know (if there is even a "you"?) that I love the Shriners, they took good care of her again. Her curves have increased more than they'd like to see. Considering how little she's worn that brace, it's understandable. Everyone has a breaking point, and that brace has been hers. For now, they recommended water physical therapy. With her also having the Sjogren's, Ehlers Danlos syndrome and hypotonia (low muscle tone) the therapists there thought water therapy was the safest. So I'm looking. Haley's just glad she doesn't have to wear the brace for now.
Our next stop was to see Dr. L (aka, world's best dentist!) because I noticed a new cavity last week. Actually she had two. That's how fast things go badly in her mouth. Her amazing dentist fixed everything with the least pain and we were off. The dentist had printed me out an article about the oral issues of Sjogren's patients. I started to read it in the office but thankfully, finished it at home. It contained helpful information but also information that shook me pretty good. I've read this before but choose not to acknowledge it. Patients with Sjogren's syndrome have a "twenty-fold" increased chance of developing lymphoma. Not fun to read about your child. The patients studied are generally 40-60 years old, so no one knows what to expect with patients Haley's age. Again, I choose not to think about it. But for some reason, the thought has been creeping in more than I'd like it to. God has been so good to us, and He's given me the most peace that I think any parent of a "special edition" could have. I read Luke 12 today. Verses 22-26 really helped me. Wasting time worrying won't add an hour to anyone's life. That's a good lesson for me. My trust is in the Lord.
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