First I would like to thank Sandi from Texas for telling me about Dr. Kemper. As some know we went to Austin on Friday and saw him. We both really liked him. I am going to try and explain this the best I can. We now have a clearer picture of what all has happen.
In May 2008 Wesley found out that he had Chiari Malformation. Brain surgery was performed in July 2008. The surgery just helps maintain the Chiari, not a cure all. But anyhow, he was better until August 2008. He became very sick. This is when we have now learned that he had a CSF fluid leak through the patch that was put in when he had the brain surgery. Because of this he came down with Meningitis. Because of how swollen his brain was and all the fluid a shunt was put in. And here we are 2010. Three shunt revisions later. Dr. Kemper thinks he may no longer need the shunt. His ventricles are colapsed, meaning he is over shunted. But, we do not know that for sure yet. Dr. Kemper thinks the settings on the shunt are not right. Not enough fluid is coming out, therefore stopping up. Without a full MRI, Dr. Kemper will not know anything for sure. There is also another disease he is testing him for that goes along with Chiari, and the MRI will show that if he has it. The plans are:
A-Dr. Kemper is getting with Wesley's Dr. here to find out exactly what kind of shunt he has, so that it can be reprogrammed if needed.
B-Wesley will be getting a full body MRI here soon.
After A and B are complete Dr. Kemper will be able to provide us with a lot more insight. We are not for sure what will happen next. Of course Wesley would love for the shunt to come out, but that procedure is invasive and a long hospital stay with a chance it will have to go right back in. The positive is Dr. Kemper knows a lot about Chiari and he will be able to give us a lot of knowledge if anything. He said it is very RARE that you have a complication like Wesley did. That gives us hope that Kyra will not be as bad. Or at least not have the rare complication if and when she has surgery. Dr. Kemper also works with a children's neurosurgeon that is top in the US for Chiari. He suggested that we make no decisions on her without seeing that Dr. first.So I can not say what is next, but I can say we got a lot of information and really like Dr. Kemper.
I want to thank all the people that pray for us. I want to thank all my true friends. I got my feelings hurt today. I have been down on myself. I just can not explain how it feels to live like I/we everyday. It is very hard to be positive, but I am trying. I will feel better tomorrow. Thats all I am going to say. I will try to keep the blog more updated for anyone that wants to read it. Thank You all. Lots of love!!