Wednesday, July 2, 2014

June and a little July

June has come and gone, and with it four doctor visits and weekly physical therapy sessions.
Lily saw:
- the NICU follow up nurse: The nurse was very pleased with how Lily is doing- following a black and white face from side to side, head control is getting better, and Lily started babbling to her when asked. We'll go back at the beginning of January.
- the ophthalmologist, who said that she can see (which we already knew) and that she has astigmatism in both eyes. We'll go back in six months to check on her again.
- the pediatric plastic surgeon, who was happy she doesn't need surgery for her skull and set her up to get fitted for a helmet. It will probably be a few weeks before she actually gets it, but it will be pink with butterflies on it and she will be as adorable as can be.
- the EEG nurses, since we're still concerned about the twitchy/jerky movements that are still going on. We weren't okay with starting a wean from the seizure medicine until we were for sure certain that the movements weren't seizures, since they seem a little different from how they were for the other EEG she had. That one was just an hour, so this one was 8 hours. The preliminary findings are that there are sharp increases in electrical activity, but not necessarily seizures. The neurologist has upped her medicine and we'll see if anything is different in a week and go from there. Most likely, we'll be heading in for a 24 hour EEG. We must get this sorted out. They don't usually bother her unless something else is wrong- if she's hungry, or mad Mom isn't holding her, or especially if she's tired.

PT is going well. We've discovered that Lily loves to bounce on a ball, and so we're working on trunk control and sitting on the ball. She's starting to get the hang of sitting on the floor and can prop herself up for a few seconds. All of the practice of rolling over from back to tummy has paid off: she rolled all by herself today! She's even tolerating being on her tummy more, though she maxes out at about 5 minutes.
The idea of Lily doing things on her own time is a little different from the reality of it, especially since the other kids met physical milestones right at or just before they were supposed to. Really though, we're thrilled at how far she has come and will take a roll at seven months! Hopefully she'll keep at it. She hasn't laughed since the first night and day after she did, but we still get lots of smiles.

In the past month, her head has grown half a centimeter, and though it doesn't seem like much, we're happy with any growth! She's gaining weight slowly but surely and is proportional with height/weight, though she is pretty small- just 12 lbs, 7 oz.

Thank you for rejoicing with us in Lily's accomplishments and praying for her and us. It means so much!

Continued prayers are appreciated for:
- her growth and development
- that she would do well at her feeding evaluation next Friday
- that the EEG would be clear and that the doctors will know how to help her

Lily and Jacob are best friends

Lily making the EEG look easy

Lots of naps were taken during the EEG

Smiles with Daddy