Saturday, November 26, 2016

Lily is 3!

Lily turned 3 on Wednesday! We are so thankful she is here with us. We are also so very thankful for your prayers and support for her and us these past three years. Really and truly.

If you could, would you offer a prayer for the repose of the soul of Dr. George, the OB who delivered Lily? He died in April from cancer. We will forever be grateful for his quick work. Please also pray for his widow, Samantha, who was my midwife (and thankfully there to help Danny, too), and his daughter, that they may be comforted. Thank you all!

Saturday, November 12, 2016

November Update

The past 9 months since our last update have been so full of changes every which way that it seems like it's been more than a year. It's been exhausting!
What's been going on with Lily?

She's doing a bit better with being on her tummy and seems to like looking at herself in the mirror while laying on the Boppy. She finds it uncomfortable to be directly on the floor because of her g-tube, but the padding of the Boppy or her wedge pillow make it bearable for a few minutes at a time. Still working on getting her to put weight on her arms to prop or push herself up. She has to work pretty hard to get and keep her head up. And since we're speaking of it, her head has grown a centimeter! We take what we can get!

Selfie with Biggest Brother

We have been adjusting her seizure medications like it's going out of style. We dropped one while adding another, and then started to add another, but stopped, while adding one that we only use if she's had too many seizures in a day and don't seem to be slowing down, and then adding back the one we stopped while decreasing another. Got all that? And it's not really working. There is one medication that seems to be doing the most good work, the one we started in May. But...she's still having seizures. Sleep seems to be a pretty big factor in it all and so we've adjusted our lives a little bit to make sure she gets the naps she needs.

Just too tired!

Speaking of sleep, in May, when we started the new medicine and dropped the old (which we've since started again, in a very low low dose), Lily's sleep pattern changed dramatically. She used to fall asleep with us rocking in a chair, but all of a sudden she didn't want to. She wasn't tolerating her last feeding (usually around 8 or 9) and would fuss and cry and then most of it would come back up. If you're friends with us on Facebook you might remember that we were having a terrible time trying to figure out what was wrong with Lily. She would wake up and then a half hour later be screaming screaming screaming...which wasn't something that she had done in a long time. We had no idea what was wrong and neither did any of the doctors. And then one day, I just decided that as soon as she started to fuss, (and hopefully before the real screaming started), I'd bring her back to bed, even if she'd only been up 10 minutes. Holy moly. Little lady was just so tired. So very, very tired. After a week of doing this, and her getting more sleep, she was so much more content...and seemed to trust us again. It seems like such a fail to have not seen that this was the problem, but she didn't always scream when she was tired. Sometimes she was just quiet and tired. But the other times....whew. Since we've figured it out, life has been so much better for all of us. She's started to go to bed earlier, around 8, when it used to be 11 or later. She's sleeping great at night and is pretty good about falling asleep by herself, though I enjoy cuddling and having a snuggle for a few minutes with her.
Because of her going to sleep earlier, she's missing her last feeding. There have been a few times when I've tried to give it to her, but she clearly doesn't want it and so we're just going with what she says. She hasn't lost any weight, but she hasn't gained, either. We're going to be starting to transition to a real food blended diet and I am hoping that that will enable us to get her the calories and goodness that she needs.

With Littlest Big Brother

There are some other things that have been going on and coming up but we'll save those for later...for now, we're just thinking about how soon Lily's birthday is! 

Passing out candy on Halloween

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