What we know so far...

So the results from the MRI were not what we had hoped they would be. We were told that Kai has a "fatty intrusion" on his spinal cord. I did some research and basically normally the spinal cord is free and just secured by an "elastic band" at the end. It needs to be free to move and bend, etc as a person grows. If it is "tethered" as Kai's is, it just stretched which can cause problems with the nerves, etc. Even though he doesn't have any symptoms that we know of now, if they don't correct it, it can lead to a whole host of problems later on in his life. Any of you medical people out there, feel free to correct my info, because this is just info I've gotten off the internet, so PLEASE correct me! I am in the "researching" phase right now, just trying to find out all the information that I can!
To start from the beginning, we got a call last week from our PA that we work with in the pediatric speciality clinic that she had talked to Dr. Pitcher and the Radiologist and they both agreed that Kai needed to be referred to a pediatric neurosurgeon. My heart just sank. "Neurosurgeon" sounds so scary when its in regards to my precious little man. She assured me that the doctor that we will be seeing is a world renown pediatric neurosurgeon, so that made me feel a little better that it wasn't just some Joe-Schmo just out of med school that's going to be operating on my baby's spine! We are now just waiting to hear back from the doctor when he can squeeze Kai into his clinic schedule. I just called this afternoon, and there are several factors that they are waiting on to determine the doctors schedule, which will determine when our appointment with him is. Sounds like it won't be several weeks for sure, which isn't what I wanted to hear. I have had a headache since I heard "referring to a pediatric neurosurgeon" so a couple weeks isn't my ideal, but I'm learning to be patient! The lady I talked to said that surgery was much easier to schedule because the the dr has 1 clinic day and 4 surgery days per week, so hopefully it won't be too long after his appointment that he has his surgery.
To be honest, I have good days and bad days. I have to keep myself busy and try not to think about it but it's definitely hard. I don't sleep real good at night and like I said, I think I am destined to have a permanent tension headache until this ordeal is over! :) I am trying hard to keep reminding myself that nothing in my life is outside the plan of God and to have peace and rest in His love, but most of the time I am absolutely terrified. Most of my fears are probably completely illogical, but even though my head knows that, my heart just can't seem to catch up. He is such a happy baby, so it's hard to be sad when I see his little drool-y grin with those 2 little teethy peeking thru. :) It's a definite postive that he won't remember all this. I have kind of started a journal because someday I know he will like to know how I am feeling and all the details that might slip our minds as the years go on and this ordeal becomes a distant memory. Thank you all for your prayers. We value them all more than you know-please keep praying!
Love to all~