A Neurology Update

I decided after my last post that I wanted my next post to be really "normal" and encouraging... happy family pictures maybe. And we are a happy family and I have many pictures I could post for that, but I'm sitting here in a quiet house looking at my baby girl and thought I'd give a quick update on our last neurology appointment, mainly to give some specific prayer requests. 

On Monday we saw our neurologist and she evaluated Eden for the first time since we left the NICU. I was hoping for an encouraging appointment, but sadly that wasn't the case. 

The cliff notes version is that she evaluated Eden's response to light and to tracking movement and she doesn't believe that Eden will be able to see. We won't know for sure for a few more months, but she expressed quite a bit of certainty regarding this (more certainty than I would have liked). She also checked her muscles and she believes that Eden is already showing signs of cerebral palsy because her muscles are quite tight. These things may seem relatively minor compared to her major diagnosis of microcephaly and lissencephaly, but it was still hard to hear. 

Additionally, she recommended that we begin palliative care for Eden. This is going to be a good thing because it will put one doctor in charge of all of Eden's care and this doctor will help to coordinate the other care that Eden receives. This is a hard thing because palliative care is for terminal patients... it's like hospice but for patients where the time limit is more uncertain. She was very concerned with how often Eden is aspirating and believes that she's at a pretty high risk for developing lung infections, which would likely be fatal for her. There is a medication that we could put her on to help dry up her secretions, but there are adverse side effects so I'm not sure that's a route we want to take. She also brought up again "end of life" care and that we'll need to think through our main goals in determining the care and interventions we decide to take for Eden. 

There's much more to this, but you can imagine why it was a hard appointment. 

Here are a few specific ways I'd love for you to pray for us and Eden:

• Pray that we find a great palliative care doctor. Someone that will be helpful and honest, but also compassionate. 
• Pray for us as we continue to monitor and manage Eden's secretions. 
• Pray that we'll have wisdom and be able to care for Eden with excellency. Lots of things come up that I don't know how to handle- like today when there was blood surrounding her g-tube. It's all foreign, so please pray that we'll be given the wisdom and insight that we need. 
• The cherry on the top of this is that we'd love for her to be able to smile- really smile. It would delight us and her adoring brothers. 
• We'd also really love for her to see. I'd love for her to be able to see our faces and to see the world around her. We do know that she can hear, and I'm thankful that this is a way that we know we can connect with her- every day she hears that she is loved, that she is precious, and that's she's just the sweetest little thing. And we mean it, and I think she knows that we mean it. 

As I've said before, I really can't think about the future too much, but when I do and the dark clouds start to gather, I remind myself that that grief isn't for today. Today she is doing great, so today we can celebrate. For now we're going to hold her and enjoy her, her doting brothers will kiss her endlessly, we'll go for walks, play at the park, and be thankful for the blessings we have today.