Plan E...or Maybe F or G

So I talked a little bit about how I like to plan ahead, but remain flexible....yeah.

The last couple of months have been kind of dark. We always try to find the rainbow, but it took a lot longer this time. The storm has been raging to the point that there was no light to create something beautiful, so we just had to be 'thankful for the moisture' (inside joke).

My own Plan A, B, C, and D have been thrown out the window. I am no longer going back to school. Turns out, my eyes have not completely healed and if I put more stress on them I could do permanent damage. School is total stress on the eyes-looking at the board, studying, computers, the works.

Plus, Cole kind of took a nose dive right when I thought that we had things figured out, again. It seems if I go two blocks away from him, something happens (except for that one time I ran around DC with my cousins for two days...THAT was awesome and a total blessing). I had a nurse quit and I have not gotten to the trusting level yet with the new one. I am not going to nanny this summer and with no school-that leaves more time for just me and the little dude. I am kind of relieved. I hate being away from him for too long.

Cole's Plan A is going alright. However, this incredible phenomenon, antibiotics, has thrown us another curve ball. Cole was sick for a solid month with fevers and random infections. He had to go on two rounds of heavy antibiotics to clear them up. Yet, now that they are over, he is out of school so he isn't picking up anything new...and he is having a honeymoon period. Almost no major seizures for a week now! They will come back, but it is so strange that antibiotics do this to him. Other Dravet parents have noticed it too. So, no implementing Plan B for now.

The good spell came at just the right time. There has been more chaos than usual in our little life. Brian's best friend was tragically killed last week. It was a complete shock to our systems and we ended up making a split second decision to get into the car and drive to Alabama for the funeral. It took 4 days, since we can only go so far with Cole. However, he tolerated it like any normal 4 year old and did not have ANY major seizures. Say, what?! He was in the car for 7 hour stretches and had no problems, when just the week before he was having tonic clinics daily doing nothing but being at home. Just mind boggling. It was our rainbow, that we could peek at through the midst of the pouring rain.

Sometimes you just have to throw all plans out the window and just learn that no matter how much you want answers and structure, the only thing you need to learn is: how to look for rainbows.