I’ve not shared any updates about Ruth’s ptosis surgery because I haven’t had much news to share. We’ve been in a sort of limbo. Here’s where we’re at:

First, we delayed Ruth’s surgery at Texas Children’s Hospital to Wednesday, June 11th, in order to give us more time to work with insurance. Since my HMO plan is limited to providers in-state, it seems very unlikely that my insurance will give us approval to go out-of-state. Still, we’re trying. It’s not for us to limit what the Lord can do! 

While our request was initially denied, we were able to make an appeal. I expect we’ll hear news about this by the end of the week. 

We did hear good news from the anesthesia team at Texas Children’s Hospital. Lauren and her mom took Ruth to a consult in Texas (four flights in one day!), and afterwards we thought we only had a 30-day window for surgery. But we recently found out that they are comfortable expanding that window as long as Ruth doesn't have any major health changes. This gives us flexibility. If we need to delay this surgery for a few more weeks again, we can. The only major change we anticipate for Ruth will be surgery on August 12th to repair her soft palate cleft. That will be a big one!

Aside from working with insurance, the other benefit to another delay is that it would give Lauren and me more time to pray and seek the Lord’s will in this.

As we’ve gotten closer to the reality of this surgery, neither of us have felt at peace about it. This may just be normal pre-surgery nerves. Or it may be that God is putting it on our hearts to wait and trust Him.

What's interesting is that it doesn't feel as urgent as it did a month ago. God is being gracious with us, and Ruth is doing very well. She still arches back to see but to a lesser extent. Or so it seems. 

There are just so many thoughts bouncing around our heads for us to capture and take to the Lord.

If Ruth has surgery, she should be able to see without arching back. But will she be so used to compensating that it won't matter? Post-surgery, she may not be able to close her eyes for at least a year. She would sleep with her eyes open, and blinking will take a lot of work (She would train the muscle above her eyebrows to blink instead of the one in her eyelids.). According to the ptosis community on Facebook (a very helpful page of thousands of families with kids who have ptosis), her eyelids would never function like normal after this surgery—blinking is slow and delayed, her eyelids wouldn’t be able to stay open in the sun without sunglasses, etc.

If Ruth doesn’t have surgery, she will continue to function as she currently does. If she's arching back less and making progress in other areas, is the surgery still necessary? Or could it at least wait? Could we offset all of her compensating movements with therapy and movement lessons? She's really encouraged us with her development in recent weeks! 

It's all so heavy. There is much to consider and much unknown. It’s easy for me to wish we had hindsight now because they say it's always 20/20. But as Aslan says to Lucy in Prince Caspian, "To know what would have happened, child? No. Nobody is ever told that.”

We want to do what’s best for Ruth. For now, that means we wait. That may seem passive, but if we're waiting on the Lord, it is anything but. Waiting on the Lord is waiting in action. What's best for Ruth is definitely not us trusting in ourselves.

Lastly, I should mention that sickness has struck again. Whatever respiratory virus it is, it clobbered me for the first half of the week. Then Ruth caught it too, and she struggled with it overnight and today. Thankfully it hasn't hit everyone else as hard, if at all.

It's yet to be determined if the anesthesia team at Texas Children's Hospital would require us to delay surgery because of this illness. I remember that this was something the team at the Iowa City Children's Hospital mentioned before the G-tube surgery. That’s a question to answer before the end of the week.

As always, we appreciate you asking after us, praying for us, and supporting us. We know we are well loved. Praise God from whom all blessings flow!