On the heels of the last post, I need to give a bit of a clarification. Things are not so bad. I always, always appreciate the support...but these moments of waiting are not too bad, and I don't want to come across as too "Woe is me...". I agree 150% with the doctor's decision to wait and see. It is the only logical option, and I trust our pediatrician completely.
Once upon a time, I was panicked almost every minute of every day. So much was unknown and KayTar was not thriving, and it felt like I couldn't breathe under the weight of it all. Things felt critical. As we have gleaned information from tests we've been through, and as KayTar has begun to thrive in the midst of it all, the panic has receeded. Of course, I still want substantial answers, but it doesn't feel like a critical situation. I don't worry that she has a tumor taking over her brain, or that her brain is slowly dying. As much as I want answers, we have the time to wait on them. I feel comfortable in the waiting. We've ruled out the really terrible possibilities. We have an idea of what is happening, even if it isn't a complete picture. Things are okay. We are okay.
We don't know if she has had a seizure. We don't know exactly what causes the episodes. We don't know if the episodes are a thing of the past. We don't know why her eyes are behaving oddly. We don't know what has caused this change in what had become the norm. We don't know what exactly caused the lesions and the hearing loss. But we know she is thriving. We know she has an amazing pediatrician and team of specialists looking after her. We know that her MRI did not change. We know she hasn't needed a Pediasure in almost a month. We know she is eating well, so well that I have been slacking on my caloric Excel spreadsheeting. We know she is walking, talking, and signing. We know she is friendly and happy and silly.
So while we have unanswered questions, the most important questions have answers, and by and large, they are good answers. We are pleased and secure in the fact that she is doing so well in spite of the unknowns, and it makes it that much easier to wait for the rest to be answered. And KayTar can't be discounted...she can never be discounted. In her own little way, she is providing more clues and as we encounter odd moments, it just adds more pieces to the puzzle...one day we will have the whole puzzle in front of us. Then it will just be a matter of putting it all together. We will get there one day, hopefully soon, but in the meantime we are okay with waiting a while longer.