We saw the neurologist for Evelyn last week. The official line is wait and see. We don’t know anything and we won’t know anything until she starts to display differing symptoms as she gets older. It’s hard, this wait and see. Wait and see if she improves, or goes downhill. Wait. See. Horrible. I have a phone appointment with our Paediatrician tomorrow to get the results from her last lot of blood tests and that’s it until after Christmas.
Encouraging things though are this:
This is Evelyn holding her head up briefly the other day. It didn’t last long and she hasn’t been able to repeat it (I say she’s storing up energy for next time) but she did it and I am so very proud of her.
Yesterday she giggled for the first time. I nearly cried.
Everything else continues along steadily. She’s still having episodes regularly, she still sleeps more than any baby ought to – especially a baby who is over four months old – and her eyes still aren’t great.
But she is deliciously kissable and every little thing she manages is a huge achievement. Go Evelyn.
Isaac saw the doctors too regarding his stomach issues and we’re looking into starting the FODMAP diet with him. I expect the adjustment period to be a bit hellish, but we hope it’s going to help. Just waiting on seeing the dietician now.
I held Evelyn’s feet in my hands and kissed them until she smiled at me. I looked at them; at the silvery scars on her heels and the remnants of failed cannulas and I tucked them back under her blanket for her; safe from air and touching and harsh needles.
I’ve been reading a lot. This year has been rough and I’m ready for it to be over. I keep dreaming that my grandmother is alive and that everything is okay with Evelyn and then I wake up and nothing is right. I’m not as mentally healthy as I could be, but I suspect a lot of that will be fixed by the holidays. Until then, I’m reading and I’m writing and I’m kissing my children.
How are you?