What a ride we have been on. Reese is great after 3 days seizure free and even sleeping through the night!
It seems a combo of the meds and the ear infection clearing up has put us back on track. We even got some giggles out of her tonight thanks to goofy brother Davis. And big girl showed the Neuro doc how she is growing so he is pleased things are better and we don’t have to switch meds yet. Also, EEG was same as before so we are looking positively to the future.
It is humbling to me how we as parents can be their greatest protector, always knowing what is best for them and love them so much it hurts, and yet have to be able to let others be the expert on how to help. I’m not feeling poetic right now, my emotions are a little numb. But I cannot begin to express how we felt the moment we got that first smile Sat and again tonight when she finally giggled. We have our Reesey Piecey back and now we have a better plan for the next time.
We hold our breath every time she closes her eyes or tries to push out a poop, because it looks like it might be happening. I cannot believe how accustomed I have become to watching my baby girl go rigid and ashen gray for 2 minutes. And I shake my head at the number of Rx bottles and syringes on my bar counter. But we are lucky. These episodes, while unnerving, are not of themselves life threatening. And it is hard to believe that, even though I say it to myself 20 times a day.
The hard part is afterward.
But today has been a really good day. So we keep holding our breath. And soaking in every moment of the sparkling eyes and sunshine smiles that she will give us. Because we fear when it will go away, behind the fog of her medicines and the exhausted little brain that is causing all this pain.
And I just don’t know when we will be able to take that breath.
