All for now

I am holding my breath when I hear the phone ring, looking at the caller id to see if it is her. It is and I wave my arm wildly to silence the kids. I have been waiting for this call for a week-waiting for the other shoe to drop. "I have the results of Karson's MRI." (not breathing, saying a quick silent prayer) The mass has remained the same size as before (huge sigh) BUT (big gulp) there is a new area of fluid on the brain." Confused, I ask what she means. She goes on to tell me that not only does the fluid remain at the back of the brain she has developed a new spot. She is not ready to do any surgery yet she says. She asks me if there have been any complaints of headache-I say no. This is something we will just be keeping a very close eye on. Then I am told that the large area of grey matter that causes the seizures will always be there. I think I knew this already just not everything that it would entail. The grey matter causes developmental delays. Finally an answer but at the same time my heart is devastated to hear this. I love her so very much and I am not ready to accept a life of constant monitoring, and medicine that she hates, and developmental setbacks. The neurologist asks me how she is doing in school and I vomit the truth to her-no candy coating this time. She says that we need to get her on an IEP for other health conditions. She is writing us a letter stating the exact diagnosis. I will set up a meeting with the principal tomorrow to get the ball rolling on the IEP testing.

I can't help but feel guilty and I am not sure why. Like I could do something different, change things. I know this is immature, my fairytale way of thinking. But hey whatever gets you through. I was having a little pity party earlier this afternoon and Matt said that "if we are only looking at developmental delays then we have it pretty good." He is so right (don't ever tell him I said that-ha, ha)

We have a cardio appointment on Wednesday and a urology appointment next week. I am definitely ready for the summer of testing to be over.