Marathon Appointment Day

We were at Children's from 9 to 4 today. It's been a long time since we've had such a long day there. They combined the hearing screen, regular Cranial Facial visit, and pre op all into one visit.

The hearing screen indicated that Ethan has minimal hearing deficiency - but they attribute that to him still having fluid in his ears (both) due to his ear infection that he had a few weeks ago. They said it was not uncommon for fluid to remain in the ears even up to 6-8 weeks after the infection for infants and it can affect the results of the hearing screen. The doctor recommended another hearing screen in about 6 months. The hearing loss was not significant and due to the circumstances, the doctors were not concerned at all. The doctor also indicated that since hearing screens are $300 a pop - if you do too many of them, the insurance company will simply not pay for them anymore. So she recommends waiting 6 months for the next one rather than another at 2 months and another a few months after that.

The issue of PT tubes being inserted to help drain fluid from the ears was discussed. The doctor said that they will not even consider talking about that until Ethan has established a pattern of significant ear infections (like at least 3 in 12 months) and/or continually showing fluid in the ears (i.e. in 6 months - if he still has fluid in the ears, and then again 3-6 months again after that). It came up because it was indicated to us that children with CFM often have chronic problems with ear infections and fluid build up in the ears and the tubes help alleviate the issue. But in Ethan's case, it is way to early to tell and they will just watch and monitor him over the next 12 months.

Otherwise, the appointments were routine. Cranial Facial is very pleased with his progress and how he looks. They will want to see him next at post op. Pre op was uneventful. The doctor discussed the procedures with us. There will be a little scarring where the procedures will be done: one by each ear where the tags will be excised and one at the corner of the mouth where the macrostomia repair will take place. The doctor said that he would spend that night in the hospital and most likely go home the next day. Surgery is still on for June 3. Total time in surgery is slated to be about 2 hours.

One thing that the doctor mentioned is that for 2 weeks following the procedure, they will most likely want Ethan's arms to be be somewhat restrained so that he can't accidentally pull on/pull out the stitches. Since Ethan *really* likes to put things in his mouth, this will eliminate that ability. So it will be a very long and probably miserable 2 weeks for all of us. He will still be able to grab and play with toys - he just won't be able to put his hands to his mouth.

- bob