A place to find out where Anne is and how she is feeling. Goal: Make this blog obsolete.

Updates

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.

 

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Comments on: "Updates" (3)

  1. Rosie and family I can’t begin to know what you are enduring all I know is you guys are amazing. I don’t think too many parents would be so involved with their child. But I have to believe that your faith is what gets you through. Anne is amazing also. F or her to withstand all of the pain and everything else. If I was closer I would give you and Christopher a break and sit with Anne. God bless all of you!!! you are for sure in my prayer.

  2. Kathy Keegan said:

    You are in my prayers. I too wish we closer so I could help you. She is way too young to be going through all this. You are wonderful parents. God bless you all. Love, your cousin Kathy

  3. Richard Kraft said:

    I am glad you have been staying out of the hospital. I am sorry to hear you have been having lots of pain and have been sick every day still. I hope you find some answers when you go to the docs. I hope you start feeling better really soon.

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