On Wednesday Grayson had an appointment to meet with his neurologist. Thankfully we had an army friend of Jesse's that could come and watch the other 4 kids so that just Jesse and I could take Grayson this time. It's so much easier without all the kids, they seem to get bored fast and just make the whole appointment super stressful.
We were really praying for nothing but good news at the appointment, but didn't seem to get too much of it! The neurologist has been talking with a few other local pediatric neurologist and two neurosurgeons. They all agree that the tumor is one of the worst possible places. It's in a location that no surgeon will biopsy so we are told that we are just supposed to sit and wait and see what this tumor decides to do at this point. Which sucks might I add!
The neurologist told us that our new fear is that this tumor will grow a tiny bit, just a little growth could cause very serious changes in Grayson. Where the tumor is located, he explained to us, that it could put enough pressure on the area that spinal fluid flows down from the brain and cut that flow off causing build-up of spinal fluid in the brain. This can cause lots of brain damage from the pressure it would cause on his brain. So we were given a list of things to look for, which seems like an easy thing to do. BUT the list is things that could be just a cold or not.
Needless to say the doctor told us to prepare for LOTS of doctor visits between now and the next 5 months. This is when the next MRI is scheduled. They are waiting this long to make things less traumatic for the family and also for Grayson. The MRI will be done sooner in the case that Grayson loses more function or shows signs of brain swelling.
This may be hard to see, but if you look at the lower half of the head you see what appears to look like an X. that is the spinal cord. On the top left part of this "x" is the tumor. The neurologist also pointed out that all areas of this "x" need to be symmetrical and where the tumor is, it's pushing it out a bit and possibly blocking some nerves causing Grayson's shaking body and inability to sit without slouching to the side.
On a different note~ we have just been living each day as best we can. It's hard some days to just keep a positive attitude and not let this get us down, but we are trying to stay happy...for Grayson and all the kids. We, as a family, will get through this. <3