Tuesday, February 2, 2016

What's Been Up

You can still say Happy New Year on February 2nd, right? I hope so.

2015 ended with sickness for everyone in our house. Lily started throwing up all of her tube feedings two weeks before Christmas. She was in good spirits otherwise and was sleeping great, so we didn't know what was going on. UVA fit us in for an appointment the day I told them we were just going to go to the ER and they did a barium study. Everything emptied fine from her stomach and the doctor didn't see any blockage (it's so interesting to be able to watch it happen!). "You're not staying for surgery, but I don't know what's wrong," he said. Her GI doctor couldn't figure out what it could be, either, but upped her stool softener (which has helped). Of course, the next day she didn't throw up anymore and started to get the cold that the 4 year old had started a few days prior. We ended up with 3 ear infections, 3 cases of pink eye, and one of strep throat. We're all finally better, but it's been hard.

At our last appointment with GI and nutrition, we talked about increasing Lily's feeds and we were doing well until she got sick. She went from 105mls to 50mls, mixed with 50mls Pedialyte. So then we had to work our way back up from there. She's now made it to 115mls and is doing well with it. We'll probably try 120mls next week. We also got a feeding pump. She had been fed from gravity bags that hang on an IV pole, and that was fine for when we were home or going to someone's house and we could bring the pole with us, but not for just being out and about. The bag would either have to get taped up on a tall piece of playground equipment (we are a sight wherever we go) or we would have to hold an open 60ml syringe, hoping that she wouldn't knock it over or that it wouldn't just come out on it's own. It also meant that we had to stop what we were doing and sit for an hour, which is totally doable with four other antsy kids. Now that we've got the pump, we can just attach it to her wheelchair, hang the bag a little higher on a hinge on the chair and keep on going!

Cuddling in bed

Seizures started up again at the beginning of December. First just one every couple of days, and then one just about everyday, and then multiple seizures everyday. Seizures are an excellent way to go from good day to bummed out day. We just added a new medicine this past week, since we've maxed out on the other one she's on. It will take 4 weeks to get to the dose the doctor wants her on, so it will probably be a little bit before we (hopefully) see improvement.

Lily got new SMOs, which help keep her ankles stable when she's in the stander. Of course, the next week we saw the Orthopedic doctor, who recommended that she get AFOs, because her range of being able to flex her foot is already getting smaller. We'll have to wait 6 months before the insurance will pay for new ones, so in the meantime, we're just trying to keep her flexible. Lily had a x-ray of her hips made and the doctor said that her left hip is already starting to come out a little bit. Apparently as you learn how to crawl and then walk, the top of your femur goes from straight to an angle, to fit into your hips (and keep your bone there). When you don't crawl or walk, your bone doesn't make that change and is more likely to come out of the socket (and be very painful). There isn't anything we can do to stop this and the solution is surgery, which involves breaking the bone at the top and using plates and screws to put it how it should be. I had to sit down. It won't be soon, but they're going to keep a close eye on her hips and we know that the surgery will be sometime in the future.

In the past few weeks Lily has seemed to be more alert and interactive, despite all of the seizures. She has tried to reach for toys (she holds her arm out straight and does her best!) and seems more interested in toys than she has previously. Her neck seems to be getting stronger, too. She can do little crunches and her head doesn't fall back like it had been when you pick her up from lying down. So that's good!

A little smile while on her tummy! A miracle!

We just received a light box and blackout board (basically a science fair board covered with black felt so that the child can concentrate on one thing at a time on a plain background, but for special needs, so it costs $$$$). We didn't receive all of the special things to use on the light box yet, though, so we haven't really used it yet, but I'm looking forward to this week when the vision therapist comes and shows us what to do. Lily likely has cortical visual impairment and these tools will aid her.

We're still waiting for her new high-low chair to arrive, but now that we're in the third month (of hopefully just three) of waiting, maybe one day soon we'll get the call that it's on it's way. We're also waiting on a new chest harness for Lily's wheelchair that won't cut into her neck, so...any day now would be great! It's so very frustrating that the special needs world takes forever and costs so much.

Lily still loves people the most and it's like Disney World to her at Mass when everyone is coming back to their pews from Communion, passing her. She gets so excited and it's really cute...and loud. She can squeal like the little girl she is when she gets excited!

Lily and Sarah