It's been a few days since we left the hospital and we are finally getting settled in. Eli has been back at school for 2 days a week and Mira is back at therapy. I was able to take her to PT and OT sessions yesterday and she had vision in-house today. Her week wraps up with feeding and group therapy tomorrow morning, which I also get to attend. Sarah gets a 'break' from Mira's therapies (which translates to taking care of Jonah at home) for the week while I am off work.
Eli is adjusting to the baby very well. He seemed pretty freaked out when Jonah was screeching at the top of his lungs the first day back from the hospital, but has gotten used to it by now. Mira cackles every so often when Jonah is crying, since his cry is reminiscent of a mix between a high-pitched baby pterodactyl and a squeak toy. It's distinct to say the least.
Mira started one of her hunger strikes over the weekend and she finally caved at dinner this evening. I was able to get her to finish off a small bowl of sweet potatoes, which is the first 'full' meal she has had in days. Nothing seems to break her cycle of not wanting to eat - we try and switch her meals up and offer up new things, but nothing makes a difference. She just decides that she wants to start eating again and we are forced to wait it out.
Since we have been seeing an increase in her head drops and jerks, we decided to move her dosage back up to 75mg daily. It hasn't been a dramatic increase, but a slow and steady one over the past few months in the frequency and intensity of her spasms/episodes. Sitting through her 1 1/2 hour therapy session yesterday, I saw at least a half dozen. I spoke to neurology yesterday and we agreed to move her dosage up over the next few days. We may just hold steady at 75mg until our appointment in the middle of July and see where she is at then. Still, no full blown tonic-clonics or anything, which is good.