The last 5+ months have been so eventful that we haven't stopped to update the blog. Instead of details, here's a list:
1. Jo's PICC line was removed in June and she is back on an oral protocol. Sometimes it still knocks her down but the last month or so she has been able to function better than we've seen in at least three years. The next rounds of medications will target Bartonella, one of her co-infections.
2. Two nights ago Josey apparently had her nose broken by our dog. She's sore but mostly amused that the dog was able to crack her nose with his tooth. He did NOT bite her but was attempting to give her some love and just hit that nose at the right (wrong?) angle.
3. A few weeks ago our older daughter got married. We've added a great guy to our family Lots of people prayed the wedding would go smoothly, and it did. Plus, Josey was able to be the maid of honor and participate in all pre-wedding activities. If you know anything about Lyme patients, you know that's a big deal.
4. Two weeks before the wedding, a dog did bite the bride on her right hand. It wasn't a serious bite but looked nasty all the way up to a couple days before the wedding. Thank goodness it mostly looked bad and was sore, and she was able to take antibiotics to ward off infection. She noted that we've gotten so used to strange occurrences that we don't even flinch when someone gets bitten by a dog.
5. My youngest child, a son, was diagnosed with PANDAS a few months ago. I had been suspicious for a while that he had a Lyme or Bartonella infection, so we had him tested. He has clinical signs of Bartonella, has genetic mutations that affect methylation, and has a PANDAS diagnosis by blood test results. Once he started antibiotics, he told us he felt "more real, braver, less nervous," among other things. His motor and vocal tics were reduced dramatically.
6. There's a new clinic in town. A local nurse practitioner and I have opened a clinic to help people of all ages with chronic illnesses. Some day these illnesses will no longer be marginalized, but treated and the patients, their friends and families supported. Hopefully we are playing a part in that.
7. Since she was too sick to attend most of high school and for so long couldn't concentrate or even retain new information, last September we had Josey excused from compulsory education. In May 2015, had she been in school and on-track, she would've graduated high school. It's been difficult for her to watch her friends go off to college this fall, but lately she has been able to work toward her GED via the HiSET. When she finishes, maybe she will be better able to see the future as a reality.
1. Jo's PICC line was removed in June and she is back on an oral protocol. Sometimes it still knocks her down but the last month or so she has been able to function better than we've seen in at least three years. The next rounds of medications will target Bartonella, one of her co-infections.
2. Two nights ago Josey apparently had her nose broken by our dog. She's sore but mostly amused that the dog was able to crack her nose with his tooth. He did NOT bite her but was attempting to give her some love and just hit that nose at the right (wrong?) angle.
3. A few weeks ago our older daughter got married. We've added a great guy to our family Lots of people prayed the wedding would go smoothly, and it did. Plus, Josey was able to be the maid of honor and participate in all pre-wedding activities. If you know anything about Lyme patients, you know that's a big deal.
4. Two weeks before the wedding, a dog did bite the bride on her right hand. It wasn't a serious bite but looked nasty all the way up to a couple days before the wedding. Thank goodness it mostly looked bad and was sore, and she was able to take antibiotics to ward off infection. She noted that we've gotten so used to strange occurrences that we don't even flinch when someone gets bitten by a dog.
5. My youngest child, a son, was diagnosed with PANDAS a few months ago. I had been suspicious for a while that he had a Lyme or Bartonella infection, so we had him tested. He has clinical signs of Bartonella, has genetic mutations that affect methylation, and has a PANDAS diagnosis by blood test results. Once he started antibiotics, he told us he felt "more real, braver, less nervous," among other things. His motor and vocal tics were reduced dramatically.
6. There's a new clinic in town. A local nurse practitioner and I have opened a clinic to help people of all ages with chronic illnesses. Some day these illnesses will no longer be marginalized, but treated and the patients, their friends and families supported. Hopefully we are playing a part in that.
7. Since she was too sick to attend most of high school and for so long couldn't concentrate or even retain new information, last September we had Josey excused from compulsory education. In May 2015, had she been in school and on-track, she would've graduated high school. It's been difficult for her to watch her friends go off to college this fall, but lately she has been able to work toward her GED via the HiSET. When she finishes, maybe she will be better able to see the future as a reality.