Saturday, June 19, 2010

Shunt Revision

Last Wednesday we took James to the ER because he had been fairly unresponsive all day. Sodium had been an issue in the morning, so we thought that was the problem. But once we got to the ER, the sodium was fine, yet James was not. A CT scan revealed that James shunts were not working. We were air lifted to Duke and James went emergently into surgery to unblock the shunts. James took a little longer to bounce back because of the extent of the surgery and the emergent nature of it.

In hindsight, it's evident that the trouble James had a month ago, which included a hospital stay, was the beginning of this shunt malfunction.

We should be heading home today, sporting a new hair style (none). James will have his next MRI on July 7.

We appreciate everyone's prayers and James continues to battle this tumor.

Sunday, June 13, 2010

Andre Sobel River of Life Foundation

It has been just over a month since I made the decision to quit my job to care of James. I know even more than before that it was the right decision. It has been a very busy month with many ups and downs for James. He still struggles constantly with sodium, which at times causes confusion and excessive sleepiness. Keeping up with everything involved in his care is a lot of work.....BUT WELL WORTH EVERY MINUTE!!!!

One of the biggest helps during this time financially has been the Andre Sobel River of Life Foundation. I was amazed when I found this foundation as they seemed to truly understand what it was like to be the parent of a chronically ill child. And, as they mention on the website, they have helped me pay the bills so that I can focus on James' care.


THANK YOU, VALERIE, FOR YOUR BURDEN!!!!