Dear Mind, Please Stop.

Den's paranoia has started to rub off on me. The past couple of days he has said that Lily has been acting weird which of course I brush off because, hello, I am with her more than anyone else in this whole world. But then the little seed is planted and in the back of my mind I do see somethings recently like the left wonky eye (I can't find another word for wonky...?), not eating as well, not sleeping as well, and now today we had an epic nap war (I won, in the end of a 2 hour fight) and when I went to go check on her after 2 hours of sleeping I see how pale she is. So now I'm worried, of course.

What does this mean? Is this a normal baby thing? She has started drooling a little bit so could this just be teething - finally? Is this high sodium? And I think, no, it can't be. I've been giving her water and juice - more so than before, when her sodium was an almost perfect 141. And she's not irritable. In fact, sometimes she seems almost manic. Like today, with the high piercing screeches, the restless moving non stop. But, I am going to call tomorrow and ask to get her sodium checked out since it is a simple blood test (when did blood test ever become simple!?)

And through all this I keep finding that little spot in my heart, that small smoldering anger that's lingered ever since the diagnosis was told to us, that we have to go through things like this. Even if this is nothing, which I am almost 85% sure that it is, I am angry that we have to be worried constantly, that any little thing she does differently is a cause for alarm, that we can never rest and shrug things off. And yes, a part of me also realizes that this is what parenthood is about - the constant worry and questions and second guessing. But a bigger part realizes how much harder it is with SOD.

Dennis and I just can't wait until Lily can talk to us. When she can say, "I feel shaky" -ah, check her blood sugar! Or when she's irritable then we know it's her sodium. Or when she's just having a bad day, which she will have and which she may even be having today.

And about her eyes. I keep thinking, and this is so wrong and I am just tired and emotional today (minus the nap wars, she was also up constantly throughout the night and my MIL was in town to say goodbye to my drama-loving-SIL) Anyways, I keep thinking, could the last month or so of this great eye sight be going away? Because we haven't noticed her eyes crossing or going wonky or bad eyesight at all the past couple of weeks. I've been diligent about not getting her overtired (when her eyes cross overly bad.) And now, recently, her left eye just looks...different. And when she nurses on my left side again (the one she boycotted for awhile) her eyes constantly twitch back as if looking for me. So, I move my head into her line of sight and her eyes calm slightly but still not completely...normal.

We have a teacher from the Governor Moorehead Preschool (The school for the visually impaired) coming out on Tuesday to evaluate Lily. I originally thought this was a waste of time but now that I'm noticing more things I am glad she is coming out, even if we don't get accepted into the program. The program, from what I understand, is not an actual preschool, but teachers will come out to our house and help Lily with exercises and therapy and such. We'll see how that goes. Some part of me, in that damn, dark places in the back of my mind, thinks they won't be able to tell me anything, and won't accept us because it's plain to see that she can see fairly well, better than any other person I've heard of with SOD or ONH.

Hopefully tomorrow will be a better day with more sleep for both of us and not so many scary circumstances for my mind to race over and over with.