I went to IPFW and had an awesome catch-up/brainstorming session with a co-teacher; she is always so supportive and encouraging. I love bouncing ideas back and forth. Not to mention, today we actually got "off track" and enjoyed some good adult conversation. :) When I left her to pick up Graden, I was feeling "nerdily-happy."
Graden's class was eating popsicles and giving hugs. I loved watching them interact. His group was, by far, one of my favorite group of kids that either of the boys have ever been a part of... and don't even get me started on his teacher and assistant --- amazing!
Needless to say, he was said to say goodbye, and we both walked out with smiles and tears. What better way to keep smiles going? Food. We stuffed ourselves on a lunch date and giggled the entire time. I am telling you -- I love that kid.
After lunch, we went to what we both thought was a simple "follow-up" appointment with his Neurologist. Simple it was not. Although she is happy we haven't taken steps backwards with his new seizure medication, she does have concerns about the potential growth in the defect in the bottom/back of his brain... by his spine.
I must have looked like she punched me in the stomach, because she sat down and calmly told me not to worry - yet. In two weeks, Graden will be going to the hospital for another series of MRIs that will include "new angles" that they haven't reviewed before (our previous doctor should have done them) and our doctor is being proactive by ordering even more than usual for this type of defect. Fine by me! Ideally, we need the defect to grow at the same pace/size as Graden's brain/body; otherwise, there is the possibility for complications... not just side-effects (headaches, pain, and such), but other "complications." Let's just leave it at that... I'm sure you can imagine when I say "brain" and "defect" and "spine" in the same post.
So, we wait. Again. Have I mentioned how NOT GOOD I am at waiting. And, it's not just because I want answers. Truthfully, with the way Graden's journey has gone, it is because of the possibility of other things happening during that time. Things I can't control. Things the doctors can't foresee. So, we wait. Two weeks. 14 days. Too many hours for me to even type.
Luckily, no thankfully, we did get the okay to keep taking the new medicine. She won't order another EEG unless we have issues, concerns, or changes in his behavior. Until then, we take the medicine twice daily and pray it helps control the "mini-seizure" activity he has; we will have another EEG in a year or so. I can handle that for now.
Of course, I knew this was coming. She told me fair and square at our last appointment that his journey was not over. It will be a ride, but some days, I want to take my Grado's hand and hop off for snack break. :) Today was one of those days.
Something to smile about? Graden told the doctor one of his "knock knock" jokes to which she replied that he was certainly her funniest patient. :) My comedian he will always be...
