Monday, September 15, 2014

Summer Update

Our main excitement: Three weeks ago, Lily got a fever and was vomiting. Though her fever had been low, it spiked the second night and she woke up at midnight and started having a febrile seizure. It was terrible. We called 911 and the EMTs were able to stop the seizure in the ambulance 20 minutes later. She arrived at the hospital wet from being doused with water and surrounded by ice packs trying to get her 103.8 fever down. Tests were run and she had a bad urinary tract infection. After being poked six or seven times trying to get an IV in her little dehydrated veins, the nurses gave up and gave her a shot of antibiotics. They were finally able to get the IV in the next afternoon on the first try, though she had still been vomiting throughout the day. More antibiotics, anti-vomit meds, and lots of snuggles, and we were coming home with a much happier Lily after two and a half days in the hospital. She seems all better now and we'll just have to be extra careful to keep fevers down and if there is any more vomiting, we'll be going in for tests and an IV before things get out of control.

Feeling better at the hospital
Chewing on her hands

After looking closely at Lily's 8 hour EEG, the neurologist determined that she is actually having seizures (small ones between 10-15 seconds). We upped her medicine pretty quickly and the seizures seemed to get worse- they bothered her more than they had previously. She's been on the higher dose for over a month now, and while she's still having seizures (between 2-3 seconds), they're back to not bothering her. We meet with the neurologist in a week and will probably be increasing her dose again. We'll just do it a little slower than before. If we can't get them under control we'll have to switch medicine. The good news is that apparently the seizures aren't causing any new damage, but are just a result of the injury.

Lily was measured for a helmet but then her measurements were just a little too good and it was denied. She was remeasured (just to make sure) and we haven't heard back yet. It feels like the ridge is getting a little flatter, but maybe we're just imagining it.
Her head circumference is pretty small and hadn't grown any at her last checkup a few weeks ago. This isn't surprising, again a result of her injury.

Physical therapy is going well when Lily is in the mood for it. She's getting better head control turning from side to side, though she still turns really quickly, or gets tired and her head gets droopy. She has a hard time keeping it mid-line. She still doesn't like to be on her belly, but is able to lift her head up well through the fussing. Lily can prop sit for a few seconds and is getting better about putting weight on her arms, but it will still be a while before she is actually sitting. She isn't very strong in her trunk, so it makes balancing difficult.

We had started puréed food with her and she seemed to really like it, taking little tastes. She was able to eat 5-7 teaspoons throughout the day, but recently has been much less interested in eating from the spoon. I don't know if I'm just timing it wrong or if it's a sign of things to come. She is still nursing well. However, she isn't gaining as much weight as the doctors would like (she was just under 13 lbs at her 9 month check up). She is getting longer though, and looks proportional, not real skinny.

Sarah likes to help feed Lily

One of the biggest problems right now is that she isn't napping well. She will sleep for a half hour if you hold her or 10-15 minutes if you try to put her down. Every once in a while she'll have a good long nap, but it's few and far between. This is exhausting for us and for her- she's just not getting the sleep she needs. She does okay during the night about half the time. It's just tiring and frustrating.

She was fitted for her hearing aids 3 weeks ago (just before ending up at the hospital), and there is some confusion as to whether she will need to have another sedated hearing test (at a hospital over an hour and a half away) or not. Each audiologist feels a different way about it and doesn't trust the ability or opinion of the other. We're stuck in the middle of it and can't get anything done- I can't believe it is this difficult. Throw in needing prescriptions from the pediatrician and a new ENT over an hour away that we'd have to see and...who knows what will actually get done.

Even though Lily is getting closer to a year old, in lots of ways she's still sort of like a 3 month old in her physical abilities and she still looks much younger than she is.

At home, she loves the vacuum and the ice dispenser. At Mass, she loves the loud organ and everyone singing- she likes to join in! She thinks we make funny faces and sounds and Danny got her to laugh when he blew on her belly. She usually just gives a smile and a little "heh!" Sometimes her shoulders go up when she does it- it's pretty funny.

 Thank you for your continued prayers!