It has been a while since we have updated this blog. I wish that meant that Anne is better, but it doesn’t. It just means that not a lot has changed and that she is in the hospital less.
She is sick every day, experiencing bouts of severe pain three of four times a day, each usually requiring narcotics. In fact, I had to pause writing this post to administer some.
She is also on IV hydration every day and lots of meds. With all this we have been able to stay out of the hospital more.
She is continuing the IVIG immuno-therapy thing once a week. That will continue probably for another 10 weeks at least.
She is scheduled to spend a week at Mayo in a couple of weeks for them to look over everything and develop a pain treatment plan.
We also have a possibility of going to Johns Hopkins, where they are using a treatment for this particular autoimmune disorder.
Keeping her out of the hospital has its advantages, but it is very challenging. We rarely can go anywhere and someone has to be at home with her all the time.