We have a date

First let me say that those tools do not go in Simon's mouth, thank goodness. They are used to adjust the NAM device that he is wearing to reshape his nose and bring the cleft palate/gumline closer together. We went in for our regular adjustment, and after another infuriating 45 minute wait in the exam room, we finally got the orthodontist, plastic surgeon and nurse coordinator in the same room at the same time!

We have a date for Simon's first surgery: Thursday, August 5. Three weeks from now, when he will be 13 weeks old. Everything is going very smoothly and exactly according to the schedule outline we were told from the beginning, but it is just agonizing waiting for it all to come together.

In spite of my complaining about the waiting and the difficulty of dealing with the NAM, the craniofacial/cleft team at Rush has been great to us. Very encouraging and helpful, and we have had a chance to see families at other stages of the process while we are in the offices, all the way up through 16 years old.

This first surgery will be to close his lip and build a nasal floor on the right side, using all existing tissue that will be repositioned. He will also probably have the soft palate closed at the back of his mouth, and the ENT will examine him and place ear tubes if necessary (to relieve buildup of fluid in the eardrum). His palate will not be repaired now. That is the second surgery, which will probably be around 1 year old.

Here is a video produced by another hospital, which explains a bit about the process. There are a few shots from the surgery itself, which can be a little hard to watch, but it is just very brief.