Tuesday, July 28, 2015

20 Months

What’s been going on in the last month and a half:

Lily had an almost 72 hour EEG: Monitored by a different neurologist, he took her off one seizure medication that she had been on since the NICU and that we had been increasing pretty steadily until we hit the max a few months ago. He put her on a different medication (that she takes less of) and it has changed her life (and ours) for the better. After a week on it, (and off the other medicine), the seizures that we were worried about had stopped. She’s been much happier and more relaxed. Before she would fuss and cry about having her bottom on the ground, which makes it difficult to learn to sit up, but now she’s much happier on the ground and can just move better in general.
We have also weaned her off the other seizure medicine she was taking (so now she’s only on one). However, we’re starting to see things that could be seizures (rapid eye blinking, other strange movements/sounds), so we’ll likely have another EEG in the future and will be talking with the neurologist about what to do with her medicine.

Head wrapped up for EEG

A week after the EEG, Lily got her g-tube. The surgery was uneventful, thank goodness, and everything went really well. We were home the next day and within a week, Lily had gained a pound. There’s been a little bit of a learning curve with the tube, but it’s been so so good for Lily. The other kids like to help with giving her medicine (so much easier now!) and getting her set up to eat. We currently use gravity bags (they look like IV bags) that we put the formula in and then it drips down the tube and into her belly. She can eat (and get medicine) while she sleeps, which is pretty handy, and she is still nursing and taking purees by mouth. We haven’t weighed her in a while, but she’s definitely getting bigger, which is so good. The other day I was looking at her and thinking that her head looked bigger. I had thought that a few months ago and when I measured, it was the same, so I tried to put it out of my mind. I kept thinking it, though, and so steeled myself and measured it anyway- and her head has grown a centimeter! I had Danny measure it, too, just to make sure I wasn’t making it up, and I wasn’t. We’re thrilled at this! Imagine that- getting enough to eat helps you grow!

Lily's g-tube. The white mesh wrap keeps the end of the tube from hanging down when not in use.
Sleep eating

We received her bath chair, wheelchair (it’s great), and stander (she’s not a total fan), a day before the g-tube, so we’ve had a lot going on all at once for her. We’re happy that she has what she needs now.

Happy in her wheelchair at big brother's piano recital

Daniel helping Lily play swords

We also moved from Florida to Virginia at the beginning of July, so Lily be getting new doctors and therapists. The week before we left, all the kids got colds, and of course Lily got it worse. Double ear infections and so much mucus we ended up in the ER two days before we left. Nothing like starting a week long road trip with antibiotics, steroids, and an inhaler!

At the ER. A rare smile while she was sick!

One awesome thing that’s happened in the last week that we’ve been waiting a long time for- Lily has started to laugh! (And we’re about 99% sure it’s not seizures…usually) It’s really the best thing ever, even at 1:30 in the morning. When she laughs, everyone stops what they’re doing and just enjoys it, laughing with her. We don’t take anything for granted around here.

And...Lily's sleep went from bad to amazing right after the g-tube and then back to bad. She's usually up until 1-2am and then may sleep until 6, or may be up again before that. Then she wants to sleep all morning and still takes a few shorter naps during the afternoon/evening. We're not entirely sure what to do, as she is supposed to have 5 feedings, 4 hours apart during the day. If we start at 7, that's 7-11-3-7-11...which means we're up until after midnight every night. We've been trying to get up at 6 to pull it all back an hour, but that's an almost heroic feat if we've been up until 2. She's just not able to take in enough for us to only do 4 feedings (and we can tell she's hungry for the last one), so we're just stuck. And so very tired, still.

So continued prayers for Lily's sleep at night would be very much appreciated!


  1. So glad to hear the change of meds has made an improvement! Still praying for yours and Lily's sleep. I'm a noVA native (not living there currently) and I love Virginia! Welcome!

  2. So happy about the new gear! How wonderful that she laughs more! Continued prayers for sleep.

  3. thanks for the update. God bless you all
    Antonia (England)