How is Nate doing?

Lots of people are asking, and I apologize for not giving updates. I'm just not quite sure what to say.

Nate's back still looks pretty bad. Clive is still here, and he might have grown a little. I think it might skeeve some people out for me to post a pic of it (but that doesn't stop me from showing everyone who stops by, and showing people photos of it on my phone!). It sticks out of his back like maybe half of a baseball. SB moms, you know what a skin covered lesion on a baby looks like? It's a lot like that.

So we sort of have a plan. The main plan is to continue to pray for healing. In fact, we have some people from the church and our Bible study to come over to the house tomorrow specifically to pray for Nate. We are praying for a miracle and believing God can heal Nate. (And I am certain it will literally take a miracle for this to go away on its own. The boy isn't cooperating with bedrest as it would be needed to heal.) But, I know that sometimes God has other miracles in mind for us, and sometimes they are more miraculous than just physical healing. So at the same time, we are still pursuing the medical options for if it doesn't go away.

Today we got Nate's medical records sent to Childrens Hospital Boston, and once Dr. Warf's office receives them they are going to set up a tele-conference for us to speak with Dr. Warf about whether the ETV procedure is a good option for Nate. It might not be, considering the fluid is collecting on the back instead of in the brain. I don't know. But we feel like we need to at least pursue this in order to make the right decision and have no regrets. We are praying the answer will be a clear yes or no.

If yes, we would travel to Boston, I guess. If no, we go back to Dr. Tulipan for a shunt. Our appointment is scheduled for Oct. 24, but if it gets bigger or starts leaking, we are to go back sooner. Blake thinks it's bigger. I think it has just changed shape.

We aren't sure when Nate will go back to school. He's already been out more than a month, and he for sure won't return for the rest of the month. We know whenever he goes back to school, he is going to be very weak from all this bedrest. He actually hasn't taken any independent steps since before his first surgery. He does take a few steps each day while putting a lot of weight on me. I've talked with the teacher and school PT about options for him moving about the school, but we don't really have a good plan just yet. I have gotten Nate set up for a new "outside" PT who does e-stim, which I am hopeful will help his little toesies start moving again, but we have to wait until the neuro says it's safe for him to return to PT.

I worry he's missing so much of school. I know it's Kindergarten, but I also know what I see of the work that they are sending home for him, and he's falling behind.  I told his teacher that it will be like him coming in as the new kid when he returns, but she assured me that they talk about Nate every morning when they go over the calendar, and once a week they have been making cards and banners and gifts to send home for him. How sweet is that?

I'm worried about a lot of things. I'm afraid his back will open, and he'll get meningitis and get brain damage or die. I'm worried he'll get a shunt and it will get infected or he'll have to have 5 surgeries to get it right. I'm worried he'll have to repeat Kindergarten, or he won't and he'll be lost at school and hate school forever. I'm afraid he'll never sleep in his bed alone again because his daddy is spoiling him so bad. I'm worried because he looks so pale. It's constant, and most of it's silly or maybe a little crazy.

I started reading this Priscilla Shirer book called, "A Life Interrupted" the other night. It's about the story of Jonah and related to how we all get these "interruptions" or "interventions" in our lives. We like to say we are going to follow God wherever he leads us, until it gets inconvenient or scary or worrisome and then we panic. Do you ever read something, and it seems like the person is writing to you personally? And sometimes it hurts a little! But really, I can sit around and worry and pout, or I can believe that God's got this. And that this little interruption/intervention is going to lead to something so great that I never would have thought of it with my little plan to keep everybody safe and out of the operating room.

So that's how we're doing.