What a year for a new year

Seems like a New Year’s Eve post should be reflective, and I’m not quite sure this will deliver in the realm of end-of-year posts. When I think about spending time considering the past year, honestly, this time I just don’t feel like doing it.

A fellow mama who’s had a hard year blogged yesterday her own gratefulness that she doesn’t have to live this year again. That was something I needed to hear. Maybe it sounds sad on the surface, but to me it read hope and future. I don’t really feel like conjuring gratefulness or ungratefulness for the year; I don’t feel like making a list of the ways I grew or have been forever changed; I don’t want to look back in bitterness, nor do I want to try seeing it as beauty because I owe it to Ava to to so. Not today, anyway.

Today, I just want to play with my kids and celebrate the fact that 2014 is over. I don’t have to live it again. It’s a good year for a new year.

It does seem fitting, however, that the last day of this year started with a phone call from the neurologist’s office. So I’m gonna throw the latest medical update in here, too, so I don’t have to start out the new year with it.

Ava’s MRI and EEG came back normal. The only thing the MRI showed was delayed myelination ….which as best as I understand it just means that the delays we see in Ava are, in fact, reflected in her brain development too. They are kind of a mirror to one another, so all it really does is affirm that she’s indeed delayed. It doesn’t really mean anything in regard to whether she will catch up or not. Apparently premies often have this myelinic delay as well. We’ll probably be doing another MRI in 6-12 months to see how the progress is, but right now there isn’t additional cause to be concerned about it. Just more motivation to keep doing therapy and helping her brain make all those pathways it needs to reach its full potential.

That aside, it’s been really nice to have a break from medical offices and phone calls this past week. I’m looking forward to a much shorter list of appointments (and no tests) in January. Life is a lot more fun when we don’t have to focus so much energy on the medical things.

We won’t have any more possible answers till the genetic & metabolic tests come back. They said it’ll be 3-8 weeks and there is only a 50% chance it’ll show us anything informative. So, perhaps it will provide some answers, or perhaps not. It’s not statistically something I’m going to sit on the edge of my seat for going into 2015.

Instead, I’ll just say…2015, I’m happy to meet you. I do hope we enjoy our time together a little more than your predecessor & I managed.

A break!

Craig doesn’t work till late tonight so we are enjoying what feels like a rare break this morning. It’s 79 degrees and sunny, and we’re listening to a brass band play Christmas music and running around the park. We listened to “Shake it Off” driving here (possibly more than once…). I think Ava would rather be sleeping, but the rest of us are having a good time not being at a hospital or lab today!!! Two more tests before Christmas and then we get a break while we’re out of town.

A-ok

Ava was pretty drowsy this morning but she is perking up now and eating some lunch. They got the MRI done and now she’s talking and getting excited again. We’ll see how the day goes, but looks like she’ll be fine. Thanks to those of you who prayed for her this morning.

Children’s Miracle Network

I was flipping through radio stations yesterday on the way to Walmart and heard 105.1 was doing a fund drive for the Children’s Miracle Network

A few hours later, we were at Arnold Palmer (making a failed attempt to get one of Ava’s tests done), and ran into the DJs broadcasting from the hospital cafeteria and sharing stories about families who depend on Miracle Network donations to get care for their kids at APH. 
On the way home, I was again flipping radio stations and caught them sharing stories with radio-land about people whose kids are at APH right now and how we can help them. It was just a weird moment. I half felt like that parent they were talking about – considering we have been at some kind of medical office 5 times in the past week – and then half felt like I was the one they were encouraging to give & feel grateful about how healthy my kids are. 
The reason I felt the latter was probably that, well, we were driving home at the time. And unlike the mom who was then sharing her story, Ava hasn’t had any surgeries. She hasn’t stayed in the hospital overnight since we first brought her home. I don’t fear that her heart will stop or that her other organs will fail her. We’ve never rushed her to the ER. These are things I’m coming to be really grateful for. 
And yet, of course we are living on the other side of that radio broadcast more that I’d like right now. I remember the first time we took Ava to Nemours to see someone about her feeding issues. Walking around the hospital, I felt so relieved that we just had this little thing to deal with, unlike a lot of the families who were there. We saw wheelchair-bound kids in the PT department and I felt so far away from all of it. Little did I know how well I’d be getting to know our children’s hospitals myself in a few months, or that we’d have an occupational therapist coming to our own home. 
I guess it’s natural for people to ask, Why us? when things like this happen. But the further we get into all this, the more I find myself asking, Why not us? What makes us so privileged that it would be someone else’s kid instead? We like to say it’s not fair when bad things happen to us, but it’s not really fair that good things happen to us either, is it? We don’t deserve any of the gifts God chooses to give us. There isn’t anything about us that earns blessing. And for sure, if my belief in God depends on things going well in life, my theology is going to fall apart fast. 
Truth isn’t always accommodating to my preferences, but I still want to choose it every time. 
Seek the Lordwhile he may be found; 
call on him while he is near. 
8“For my thoughts are not your thoughts, 
neither are your ways my ways,” declares the Lord
9“As the heavens are higher than the earth, 
so are my ways higher than your ways 
and my thoughts than your thoughts. 
10As the rain and the snow 
come down from heaven, 
and do not return to it 
without watering the earth 
and making it bud and flourish, 
so that it yields seed for the sower and bread for the eater, 
11so is my word that goes out from my mouth: 
It will not return to me empty, 
but will accomplish what I desire 
and achieve the purpose for which I sent it. 
12You will go out in joy 
and be led forth in peace; 
the mountains and hills 
will burst into song before you, 
and all the trees of the field 
will clap their hands. 
13Instead of the thornbush will grow the juniper, 
and instead of briers the myrtle will grow. 
This will be for the Lord’s renown, 
for an everlasting sign, 
that will endure forever.”

Good news for Ava’s hair :)

This is a picture of us walking away from the doctor’s office, because Ava doesn’t need a helmet and we don’t have to come back to this one!
Wish I could’ve gotten a picture of the test though. She looked really cute and the scan looked like a marble statue of her head. 🙂
So, we are celebrating no helmet, and Ava can keep showing off her pretty hair growing in. 🙂

EEG

ATis the season for testing…

Ava did great at her EEG today. Looks scary but it was more like a spa date with my daughter (well, minus the massage, plus some fun headgear for her).

Ava was really happy to get some food afterward!