St. Jude Novena Update

Thank you for praying the St. Jude Novena with us. After trying for a month to get all the records from Florida sent to Virginia, and after being told that after they got the paperwork it would be another month before we got an appointment, we got a call on Day 2 of the Novena that the neurologist got everything in and had an appointment that day, if we’d like it. Well, of course we would!
That appointment set up referrals for most of the other specialist doctors that Lily needs to see and we’ve had appointments with some already. And they’re good doctors. Miracles! Her new pediatrician is also on the ball, so I’m really happy with how things have been going. Thank you, St. Jude.

At the neurologist appointment, we upped her seizure medicine dose since we were still seeing seizures. Two weeks later, we were still seeing seizures, so we’ve upped it again. It’s been a few weeks and she’s not had one (we don’t think…there have been a few times that looked suspicious). This is such a relief. I doubt that she’s at a dose that will keep them at bay as she grows, but it works for right now, and she’s still on a fairly low dose. Life is so much easier when your child isn’t having seizures. She had another short EEG just after upping the dose, so we’ll see what that says at her next appointment in January.

I only pulled one wire off at the EEG

Lily’s sleep got a little better and is now worse again. I’m not sure what prompts it to go either way. We’re very, very tired. The sleep situation has made Lily’s PT appointments fairly non-existent, and because the PT we had could only come on Monday and had very little flexibility with the time, we have decided to try a different PT who has more wiggle room with days and times. I hope that it works out well and that Lily makes the switch again to days being days and nights being nights. It's just harder than hard to only be getting a few hours of non-consecutive sleep each night.