First visit with Dr. Wrubel

The visit today with Dr. Wrubel went very well! Wesley and I actually got to enjoy eating breakfast together at Einstein's Bagels because we got to the appt. so early. Lucy was a complete angel -- even though she hadn't eaten since 6:30 this morning. She got through the whole appointment without crying and I was able to feed her in the car before we went home.

Another nice thing was being in the waiting room and seeing a lot of other young couples with their babies who have other problems, too. We couldn't tell if any of the other babies had craniosynostosis (I think some of them might have) but everyone just seemed really positive and it helped me to remember again that we're not the only ones going through this.

We met with Dr. Wrubel's physician's assistant first, a really nice young lady. She just asked some preliminary questions and then we met with Dr. Wrubel. There wasn't a lot that we hadn't already talked about with Dr. Mackay. He said he was going to refer us to a pediatric opthamologist because Lucy's eyes are not exactly straight and they can kind of wander or not be looking in the same direction all the time. I asked him about the orbital advancement (the additional procedure where they move the bone around the eye sockets forward to compensate for how far back that part of her face is now). I didn't know how her eyes would look if they just moved the bone forward, but he explained that the lining around the eye sockets is attached to the bone so when they move the bone forward, the eye sockets will come along, too. He said that her eyes might look a little "funny" until everything has kind of grown into the right place, but then it should be okay.

I asked him about the possibility of having to go back in and do an additional orbital advancement or having to fill in the bone ... when the surgeons do the orbital advancement, they are making an educated guess about where to place the bone based on the child's facial growth and how they think it should look and where it should be. But I had heard recently from a lot of other parents whose children had that same procedure that almost all of them had to have a second surgery to put in bone or tissue to fill in the gaps where the bone did not grow like the surgeon thought it would. He said that it's about a 10% chance that she'll have to have another total orbital advancement and about 15-20% that they'll just have to go in and do some filling in for more cosmetic reasons. I'm praying it's going to be 0%. :)

He said that her head is really growing up a lot (he called it "towering"), and if that continues then they may have to reshape the back of her head, too, when they do the surgery. And he confirmed that the surgery would take place in November or December. Before we left, we met with his surgery scheduler and she asked us if we had any particular date that we wanted, or that we wanted to avoid (especially since it will be the holiday season!). We just told her the sooner the better! So if we're unavailable for Thanksgiving or Christmas this year, I'm sure everyone will understand why. :)

We probably won't see either doctor again until right before the surgery date, unless there is a reason for us to. I'll try to update this blog every month just with how things are progressing and add pictures of Lucy as she grows ... so everyone can be updated and for us to have a record of how she has changed.

Thank you to everyone who continues to support us, pray for us, send us sweet messages and encouraging Scriptures. You will never know how much it strengthens my heart and Wesley's heart to know that we're not doing this alone and that so many people care about us and about our treasure, Lucy. God is very powerful and His word never returns void, so we just continue to pray Scripture over her and we believe it to be true!