Well that was unexpected

Today was Emma's pre-surgery appointment with Dr. Troup. Dr. Troup started by asking us how Emma's been doing in general. We gave him our report of Emma's life for the past 3 weeks since we saw him. After we were done with that, he said, "It sounds like she's doing ok. That being said, let's talk about whether or not we want to do this surgery next week." And then I remembered what kind of person we're dealing with - he errs on the side of caution and schedules OR's just in case he needs them. I knew he wanted to talk to us about the surgery before it actually happened, but it had not occurred to me that the surgery could be optional right now. Dr. Troup is going out of town for 10 days after Emma's surgery, and he wanted to know if we felt comfortable with him doing the surgery and then leaving. Without even consulting Russell, I said, "NO. I am NOT comfortable with that." Luckily, Russell feels the same way. Well, either he feels the same way or just decided that now is not the time to disagree with me. Anyway, Dr. Troup feels that because Emma is doing about the same overall (improving in some areas, getting worse in others), there's no immediate rush to do this surgery. That's a very positive thing! He feels that there's a chance she could kinda outgrow this muscular problem in her throat. So if you feel led to pray for her specifically, that would be the prayer I think - that her throat muscles would strengthen and that the neurological connections in her brain stem controlling them would work properly.

We will have another couple of MRI's of Emma's head and spine, as well as another swallowing study, in 4 to 6 weeks. Dr. Troup will then look at all those results and compare them to the ones Emma had 4 weeks ago. Let's start with her head: if the Chiari malformation still looks pretty bad, and Emma's symptoms either get worse or don't improve at all, he will go in and remove some bone. Now moving on to the syrinx (cyst filled with spinal fluid) in her spinal cord: If the syrinx looks the same in a month as it did a month ago, he may just do the Chiari decompression. Allowing her brain stem more room will also allow the spinal fluid to flow up and down her spine more freely. This means that the syrinx could drain on its own. OR if the syrinx looks much, much worse in a month than it did a month ago, Dr. Troup will insert a needle into her spinal cord during the same surgery to drain the fluid. When you're dealing with infants, it's best to wait as long as possible to allow them to mature as much as possible. On top of that, if an infant has respiratory problems, you want to intubate them and put them under anesthesia as little as possible...so if Emma needs both surgeries, Dr. Troup would prefer to do them at the same time.

Another unexpected development is that Emma has started to go a little cross-eyed. Not awful, but every once in a while, she looks a little cross-eyed and then she stops. We asked Dr. Troup about it and he said that (1) if a child JUST has spina bifida, she could have vision problems; (2) if a child JUST has hydrocephaly, she could have vision problems; and (3) if a child JUST has a Chiari malformation, she could have vision problems. Emma has all 3, so Dr. Troup was not surprised AT ALL that Emma's eyes were starting to cross a little. He recommended us to a pediatric opthamologist, and we see him on Friday. It didn't sound like we needed to panic about Emma's eyesight because catching it early is key, I think. With infants, if they start to go cross-eyed, they start seeing double. As the brain is developing and vision pathways are being set, the brain will basically just shut down one eye so that the other eye is the good, functioning eye. Clearly, you don't want that to happen. Of course, we may get to the opthamologist Friday, and they may say that there's nothing to be concerned about. We'll see.

All of this progress today has really served to confirm all of the decisions we've made and has made me feel a little bit better about God's plan. I've been trusting Him all along, even when my heart was questioning Him, and today just seemed to be a positive, forward-looking day in the midst of weeks of just enjoying the present because we don't know what will happen tomorrow. We still don't know what will happen tomorrow, next week, next month, but it's really nice to get some reassurance about Emma's current medical state.