Everything was pretty much the same and they're happy with how he's doing. He's still on track for major jaw surgery at about age 7-9. However, we got more details of what this will eventually involve. Once this starts - it will not be a good year for Ethan... :-(
Most likely there will be one major jaw surgery before the main one to lengthen his jaw. This will involve taking bone and cartilage grafts from his ribs and using it to create more bone and/or joints at the joint where his jaw hinges together. It is not known definitively if this surgery will be required until they take a CAT scan to see what they have to work with - and they will not do this until about age 7 when he's getting into the window of time where they want to do the procedure. However, it was the doctor's opinion that he would be very surprised if Ethan did not require this surgery. After this surgery, it will be at least 6 months (minimum) before the jaw distraction surgery can take place.
After this surgery, the jaw distraction (jaw lengthening) can take place. This will involve breaking the jaw in two places - one on each side - and inserting the distraction device. Once in place, there will be one month of actually using the device (turning the screw on each device on a nightly basis to lengthen it and hence induce bone to grow in the gap). There will be at least two visits per week to Children's during this time to monitor the bone growth. X-rays will probably be taken at each visit. This period could go longer than one month but the doctor estimates that amount of bone that needs to be created will take around 1 month. After this process, the device is left in the jaw for about another 2 months. At this point - the device is what is holding his jaw together so it is left in place while the jaw heals over the next 2 months.
At the end of the healing period, there is the final surgery to remove the devices. After the devices are removed, he should be healed enough that no further healing is required - essentially the day after the devices are removed he is free to eat anything and do any and all activities. However, for the 3+ months prior (i.e. when the devices are in place) he will be on a severely restricted regimen - very soft foods only, probably very little physical activities, etc.
It will probably be a very unpleasant year for Ethan... :-( They did say they will accommodate you if you want a summer time surgery so he doesn't have to go to school with the devices implanted (most parents opt for this so summer is a busy time for them in terms of this type of surgery) but given that the entire process will be a minimum of 3 months - that will be his whole summer vacation so I'm sure he will be *very* unhappy about that.
Since it's at least 4 years away, I probably will choose to simply not think about it until then. We do not meet w/ the plastic surgeon again for another followup for another 2+ years at this point. So nothing will change in terms of the surgical schedule so no need to think about it. So I'm choosing not to.
Other news: Ethan had another regular hearing screen and the results came back the same as last time so this is good. Essentially, his hearing is not expected to change, but as he gets older, they can get more reliable data from him and that is the reason for the periodic hearing screens. So far, the data is fairly stable: he is giving pretty consistent data telling us what we already know.
His otolaryngologist saw him and there was nothing new there either. There was some talk of possibly inserting ear tubes to help drain fluid from his right ear to possibly improve the slight hearing loss he has - but given it will require general anesthesia and every time Ethan requires a general he also needs to be intubated, we all agreed to simply leave it as an option on the table and do nothing for now.
He meets with this ophthalmologist at Children's in two weeks. We expect to walk out of there with glasses for Ethan. We hope to be surprised and come out w/ nothing - but we're really not counting on it.
- bob
