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

Saturday, December 26, 2015

Merry Christmas!

Merry Christmas from our family to yours! Thank you so much for praying for us and Lily!

Lily is excited about unwrapping her bright orange Slinky!

Monday, November 30, 2015

St. Jude Novena Update

Thank you for praying the St. Jude Novena with us. After trying for a month to get all the records from Florida sent to Virginia, and after being told that after they got the paperwork it would be another month before we got an appointment, we got a call on Day 2 of the Novena that the neurologist got everything in and had an appointment that day, if we’d like it. Well, of course we would!
That appointment set up referrals for most of the other specialist doctors that Lily needs to see and we’ve had appointments with some already. And they’re good doctors. Miracles! Her new pediatrician is also on the ball, so I’m really happy with how things have been going. Thank you, St. Jude.

At the neurologist appointment, we upped her seizure medicine dose since we were still seeing seizures. Two weeks later, we were still seeing seizures, so we’ve upped it again. It’s been a few weeks and she’s not had one (we don’t think…there have been a few times that looked suspicious). This is such a relief. I doubt that she’s at a dose that will keep them at bay as she grows, but it works for right now, and she’s still on a fairly low dose. Life is so much easier when your child isn’t having seizures. She had another short EEG just after upping the dose, so we’ll see what that says at her next appointment in January.

I only pulled one wire off at the EEG

Lily’s sleep got a little better and is now worse again. I’m not sure what prompts it to go either way. We’re very, very tired. The sleep situation has made Lily’s PT appointments fairly non-existent, and because the PT we had could only come on Monday and had very little flexibility with the time, we have decided to try a different PT who has more wiggle room with days and times. I hope that it works out well and that Lily makes the switch again to days being days and nights being nights. It's just harder than hard to only be getting a few hours of non-consecutive sleep each night. 

Monday, November 23, 2015

Two Years Old

This year has been full of challenges, triumphs, and joys. We have been bone crushingly tired (and remain mostly so). We have spent days in the hospital. We have cried, but not as much as the first year. We have laughed. We are in awe of just how beautiful Lily is, how perfect.
I love
…how she smiles sweetly as she drifts off to sleep
…how she loves to snuggle with Daddy
…how she only pops her jaw when she’s happy or content, or to get a reaction from people
…her little coos, that are sometimes very loud!
…finding out what toys she likes
…her excitement when anyone in the family comes by
…that she loves kisses

There is a lot that you have to come to terms with as a special needs parent. Will she? Won’t she? Does it matter? I admit it is still difficult to see children about the same age as Lily doing what she would have been doing. It’s hard to see little babies doing things that she can’t. There are definitely some challenges to having a two year old that is more like a four month old. And there are joys.
I think that’s what I wish that the doctors had told us the day they gave us the Officially Official news. Yes, tell us that it looks bad. Tell us what it might mean. But then don’t leave it there and ask if we’d like to go into the other room to cry. Tell us that we will love her fiercely and that we will find the joy, the hope. That the little things she does will be cause for great excitement (even though that will sound bad at the time). That we’re going to meet people along this path who will comfort us, encourage us, and help us. That we’re not alone. No, we didn’t ask for this, didn’t plan for this. That it’s going to be hard- so so hard… and that it will be beautiful, so very beautiful.

Happy 2nd Birthday, Lily Bean. We love you more and more each day.

St. Lillian, St. Faustina, Our Lady of Loreto, and her Holy Angel, pray for her!

Thursday, November 19, 2015

To Terms and Trees

I'm pretty sure I probably had a panic attack when we were first discussing wheelchairs about a year ago. It's actually just been in the last few months that I've really embraced it (seeing how happy Lily is in it sure helps.) So when the equipment guy showed up today to pick out a feeding/activity chair that will be loaded with supports and all sorts of options that scream "I can't sit on my own" you would think I might be sad. Totally the opposite now. I am so thankful that Lily is able to get what she needs to live the best life she can, and I'm thankful that I've come to accept where we are in this life. (And we need a bigger house. All the equipment is huge.) 

 Lily looking at the trees at the playground today

Sunday, October 18, 2015

St. Jude Novena

Starting tomorrow, we will be praying the St. Jude Novena with intentions for Lily to sleep at night and for all of the medical things that need to be sorted out to be so (and for her to have good, caring doctors). Saint Jude is the patron of Hopeless Causes and Desperate Situations, and these things seem more desperate and hopeless each day for us.
We would find great comfort if you would join your prayers with ours. Thank you so very much!

Here is the link for the Novena: http://www.praymorenovenas.com/st-jude-novena/

You can sign up for it to go directly to your email.

Sunday, October 11, 2015

23 Months (almost)

Getting doctors switched has been the most ridiculous and frustrating experience. I need an assistant just to get this done. I wish I had known it was going to be impossible! Suffice it to say: we’ve not yet met our new neurologist and though getting a pediatrician was easy, I’ve already had to fire him. Seeing a new one on Monday, who hopefully knows his stuff, because I know mine.

Lily is still having seizures. I don’t know what else to say besides it’s hard to watch and suffer through with her. Hopefully we’ll be able to get in to see the new doctor within a month or so and try to get things figured out.

She’s doing really well with the g-tube and now has a Mic-Key button since her first tube’s balloon deflated and the tube came out. One more experience (and two trips to two different ERs) under our belts. The balloon keeping the tube in her stomach will deflate every few months and she’ll need a replacement tube then, so this is just one more thing to deal with.

We love our new PT and OT (occupational therapist.) Lily sees each of them once a week now. They are pleased with how she’s doing. She’s getting closer to sitting by herself, though she still arches back and if she has a seizure she goes rigid, so it makes it that much more difficult. We’re working on finding toys that she likes- lights, music, and vibration are winners.

Up next in the equipment department is a new chair for feeding (and just being) in. The little highchair she has now still isn’t cutting it and she needs more support. We’re waiting on the Equipment Man to call our OT back to set up an appointment.
Lily is doing really well in her stander and really seems to enjoy it, which makes us happy, since it’s good for her to bear weight and straighten her spine. I just wish it had handlebars so we could push her around easier- she loves moving around in it.

Now that Lily is over 31 inches tall, she’s officially outgrown her infant car seat, and we’ve been bracing ourselves for the switch to a regular car seat and using her wheelchair, since she still takes so many naps in the car and it’s just so easy to take out the infant seat and bring her with us. It had to be done though, and I’m pleased to say that our outing Saturday went really well. We did end up needing a new car seat since the one we had wasn’t supportive enough (a trend you may notice), but the new one is really great. She did really well out and about in her wheelchair and took a few naps in it, which gives us such peace about it being just right for her, and knowing she’s comfortable in it. Today was the first day that she used it at Mass and she did great. She stayed in it the whole time and took a little nap. We are wondering who thought we just parked a stroller in the handicap pew spot. The base is a Baby Jogger, (which is awesome! And after using a two seater stroller for the past 6 years feels really tiny), so if you didn’t see all the extra stuff she has for the chair part, you’d probably think it was a regular stroller.

The most terrible news is that she has pretty much completely switched her days and nights. She is frequently awake from midnight or 1 to 8-8:30 am, which is leaving us absolutely and completely exhausted. I don’t know what the official requirements are for sleep deprivation to qualify as torture, but I think we’re at least close to it. Really, we’ve reached our ends. If we were able to wake her up during the day, we would. When Lily wants to sleep she will either just fall asleep or cry (and throw a huge tantrum) until she is put to sleep. If she is woken up from this sleep, the process just repeats itself. She will not go to sleep if she is not tired. We’ve been taking shifts during the night but we’re really worn out.

So that’s about it for now. We’re still just taking each day one at a time.