What's going on........

We have suspected for a couple of months now that Max has been headed into a relapse. Our worst fears were confirmed last week. My sweet little boy is back to battling an orphan disease. We had 5 wonderful months of remission but it seems to be over for awhile. The first step they are taking this time is to put the feeding tube back. He is losing weight at a pretty rapid rate due to the fact that he isn't absorbing the nutrition from his food. Without that nutrition, not only will he not grow, but his hair, nails, and brain won't grow. That is pretty scary for any child at such a great developmental stage.

Max is not happy with us right now. He does not want the feeding tube again and is trying very hard to con us! The first time around he was so little that he had no clue. This time around he is old enough to know what is going on and is NOT happy. If you are new in our lives and want a better idea of what happened last time please feel free to check out our old website at:
http://freewebs.com/mom2catienmax

We are currently waiting on a response from the National Institute of Health regarding a study program for Mastocytosis. Getting into that program would be a miracle and we need one right now. There are still no specialists in this area that can help Max and we are having to look at outside resources. We need lots of prayers that this program will accept Max.

As we go through all the testing and appointments and surgery, I will try to keep this updated. After awhile it gets so hard to tell so many people what is going on and this website is a great outlet for me to be able to get all the events out of my head. If you leave them there too long they start to rent space! It keeps everyone that wants to be informed on an up to date idea of what is going on with Max.

Please feel free to ask any questions. We love to answer questions about this disease and the more people that are informed means that more people might get diagnosed and cure might be easier to find. Correct information is good information.