Ruth Truth has always had heavy eyelids. I don’t remember noticing it much when she was really little. There were so many other things on our minds at that point. But it’s definitely become more apparent now that she’s grown bigger. She will have just woken up from a nap and someone will comment that she looks like she’s ready to go to sleep. But this is how she always looks. They don’t realize that she has ptosis.

Ptosis is defined as “drooping of the upper eyelid due to paralysis or disease, or as a congenital condition.” For Ruth, this is attributed to her hypotonia—an abnormally low level of muscle tone—which is due to her genetic disorder, SLOS.

God’s design of the human body is truly incredible. Since we live in them, I think we take this for granted. But mankind, made in the image of God, are the crown of His creation. 

Bumblebees weren’t made in God’s image, and neither was the symbiotic relationship between trees and the fungus living in and around their roots. Bayou ecosystems weren’t made in God’s image, and neither were jet streams. The Red Spot on Jupiter wasn't made in God's image, and neither was the Andromeda Galaxy. 

That’s stunning. Each member of the human race stands apart from the rest of Creation and above it. It’s only fitting that we wonder at the design that clothes us. 

While I wouldn't argue that we’ve learned much about the human body, I would say that we don’t know nearly as much about it as we think we do. If we think we can just explain and summarize it with numbers, we're mistaken. It's more than that!

One of the reasons I’ve been thinking about this is because of what we’ve learned from Ruth’s ptosis. It seems like a small thing, but it's an example of how one minor thing can have major ramifications. 

According to the ophthalmologist, Ruth's vision is great, but her field of vision is severally limited. This is because her eyelids aren't able to fully open. 

Imagine having a visor pulled low over your eyes. Your field of vision is focused downward. If you want to see ahead or above without touching the visor, you have to arch your head back. Imagine doing this all the time because everything you're interested in seeing is always above you. 

As one might expect, this has the potential to cause a lot of problems for a baby. 

One of these problems is that muscles in their neck begin to become used to compensating. It's not just that they become strong, it's that they become used to working in ways that they shouldn't. If this isn't addressed through therapy, then normal positions, like lying on their back, can become intolerable and even painful. 

Another problem is that a baby's center of gravity for movement development should be in their pelvis. If a baby is constantly arching backwards, their center of gravity shifts up to their shoulders. This significantly hinders their ability to sit which then slows or even stops the movement development that follows that milestone.

Neither of these are ideal long-term. Where most of us will have trouble with our necks from looking down at our phones so much, Ruth will have trouble in the opposite direction. 

This is where surgery becomes a consideration. If Ruth could have surgery on her eyelids to open up her field of vision, then some of these problems could potentially be resolved. 

There are a couple of surgical options available, but the one we prefer is called frontalis flap surgery (or frontalis muscle advancement). This procedure is relatively new, and we’ve been trying to determine where to go for it. 

First, we had a consult in Iowa City. But the oculoplastics surgeon there only started doing this surgery a year ago. We would prefer a surgeon with more experience. 

After looking through a Facebook group, Lauren found a few recommendations from other parents. One of those is a surgeon at the Children's Hospital of Philadelphia, but not long after Lauren made contact with them, that door closed. That's because they wouldn't be able to work with our health insurance. Back in November, during open enrollment, I opted into the HMO health insurance plan, which covers in-state providers. That's what I've always done, and I never considered that we would need to see out-of-state specialists. The PPO health insurance plan is much preferred if going out-of-state, but I'm not able to switch plans anytime soon.

Another surgeon, the one who invented the frontalis flap surgery and has done it for twenty years, is in Spain. He's the best in the world. We had a virtual consult with him, but that door also closed. This time it was because their anesthesia team wanted Ruth to be at a certain weight. It will be several months before she's where they want her, and we would prefer to have this surgery sooner rather than later, if possible. Not to mention that flying Ruth over the Atlantic would be a great feat.

Most recently, Lauren made contact with a surgeon and team at the Texas Children's Hospital. He's been doing this surgery for about seven years, and he is well-connected in this field. In fact, he used to be at the Iowa City Children's Hospital. We've been working with the team down in Texas, and they've been great. We're still not sure if our HMO health insurance plan will contribute anything toward this surgery, but the team at the Texas Children's Hospital is going to see what they can do. While we don't yet know how this will all come together, we're moving forward in faith. 

Early this morning, Lauren, her mom, and Ruth flew to Texas to consult with the teams that will perform this surgery. We expect them back late tonight, so it's a whirlwind trip for them. If it turns out that going to the Texas Children's Hospital for this surgery is the best option for Ruth and our family, Ruth could have surgery as soon as next week.

I would be remiss not to mention how exceptionally well Lauren has done in all of this. She's researched, connected, called, scheduled, planned, and packed, and all this in addition to the everyday care she puts into both of our girls, our home, and me. I am continually in awe of her generous, sacrificial, and diligent example. Her Christlikeness is evident and radiant.

Surgery doesn't return everything to normal, so we really debated if and when Ruth needs it. Making this decision has been heavy on our hearts, but we've had several specialists tell us that it is needed. While it doesn't seem optional, it's tempting to think that it's not critical.

In that way it's very similar to the G-tube surgery. We knew it was necessary, but it was hard when we went through with it. It required much care and stress in the short-term, but it's been helpful and easier in the long-term. This surgery will be much the same.

This is only an outpatient surgery, so Ruth shouldn't need to stay overnight in the hospital. After this surgery her eyes will be sensitive, and she very likely won't be able to close them all the way. In fact, full healing may take a year, during which she will probably sleep with her eyes open. Because of this, Ruth will need a lot of eye drops to keep her eyes from drying out. She will have redness on the skin around her eyes from the surgery, but there shouldn't be any permanent scarring. In a few years, there may not be any signs around her eyes that she even had this surgery. 

This is another test of our faith, but we're hopeful, and we're praying. Thank you for your prayers too. The Lord continues to do more than we can ask or imagine.