We're back from Pittsburgh...for now. It seems that every time we get one step closer, we take two steps back. We saw the surgeon (loved him...he's a little guy that is very methodical - and was wearing a purple bow tie lol) and his first words to us were "I have no idea what this is". I answered..."hmm, that's what we hear every where we go". He gave us his thoughts on what he thinks it may be but again, no one really knows until they get in there. He sent us back home for an MRI (we tried getting it done while we were there but there were no openings). He wants to get a better look at the makeup and size of this before he gets in there. I should hear back this afternoon with an MRI date. The surgery will then be scheduled once he sees the results. So our next trip to Pa will be to have this removed! Going in to this, we thought it would be a pretty easy surgery...we were wrong...very wrong! We were told yesterday that the only way to remove this is to cut "C" from ear to ear across the top of his head. My poor little guy will have to be shaved bald for the first time since he's had hair come in. I can't even imagine that pain that he will be in...thank goodness for medicine! I am very thankful that we are having to do this at such a young age as he will not remember any of this. I am really worried about the scar but everyone is being nice and saying...that will be his character mark. I'd much rather have a different mark but we just have to go with what we're being dealt. We're getting to the bottom of this...one piece at a time!
5 weeks ago