Mixed Results With A Bias To The Upside

Ethan had a plethora of regularly scheduled followups at Children's yesterday. The bottom line coming out of all the appointments is that Ethan is doing well; nothing to see here - move along, move along!

He was evaluated by a speech pathologist/therapist and the recommendation was that Ethan continue with speech therapy. He has made tremendous progress since he began, but there is still work to be done (he still does a lot of consonant substitution) and he is probably not ready yet to be discharged from his therapists' services.

Ethan also met with his plastic surgeon. His post-surgical scars are coming along very nicely. It was felt that he is on track for his next major surgery (the jaw distraction) at about age 8 (but see note below). There is the outside possibility that he may not have it until age 18, but that seems pretty improbable. Basically, the road map is as follows: if, as he grows, the mandibular hypoplasia is really not that bad at all when he reaches age 8, then they will postpone any further surgical intervention until age 18 when the jaw is almost fully grown and they can at that time not only do the jaw distraction, but all the orthodontic work that may need to be done to correct any jaw/teeth misalignment. If he needs the surgery at age 8, there will be a followup surgery to do the final corrections at age 18. Between ages 8-ish and 18, they prefer to do nothing if it at all possible. So age 8-ish is crucial as it is really a fork in the road. So while it is possible that he may not need the surgery at age 8, it seems unlikely as his mandibular hypoplasia would have to be quite minimal. But there is always hope... He will have a followup with his plastic surgeon in about one year.

We also went over the results of his sleep study. While the results are hugely improved over the results of his pre-op sleep study, on their own, they are not great results. Before his tonsillectomy and adenoidectomy, he had up to 24 sleep apnea occurrences per hour peaking with up to 48 per hour during REM sleep. Post surgery, this fell down to about 6-8 per hour. This is a vast improvement. However, 'normal' is considered to be about 1.5 per hour. The general consensus was to just watch him and to have a followup sleep study in 6 months. If the results are very poor (as in much worse than current), then early jaw surgery will be reconsidered. However, if the results are better or the same (or even marginally worse) the course of action could be varied: resume oxygen at night, CPAP, or possibly nothing at all. So again, we shall see...

Ethan also had a followup hearing test. This was actually his best test to date as he actually seemed interested and engaged and gave good results (as opposed to in the past where he seemed to get bored and then simply ignored the test after giving initially good responses). The results seemed to indicate he possibly does have some hearing loss in his right ear but over all, his hearing loss is not enough to be of any developmental hindrance. There will be yet another followup test in about 6 months or so when he will be about 3 years old and he will be old enough that they can administer a different type of hearing screen.

So overall the results were mixed. He is doing much better, but the results were not stellar. His sleep quality is still not considered 'normal' but it much, much improved. His speech is likewise greatly improved, but there is still work yet to be done. The common theme running through all the appointments today was, "see you in six months!".


- bob