Katie Medical Update

So when we first came home from China, we took Katie to see our wonderful pediatrician right away.  She got us in to see the closest cleft team in May.  This team is over three hours drive away from us, but please understand we were happy to do this for Katie. However, to say that I was unimpressed by this visit would be an understatement. Usually these visits are scheduled with a TEAM- a plastic surgeon, ENT, audiologist, speech therapist, pediatric dentist, and social worker, etc. Well, that day we saw only the surgeon. He spent all of 5 minutes in the room. He asked a few questions. He looked in Katie's mouth for a hot second and said she didn't have a cleft palate (we know that!) He says come back in six months and we'll talk about lip revision.

Say WHAT??? Have you seen her lip repair??? Seriously??? It's not perfect, but it's close. Certainly close enough for an 18 month old! It is functional and looks nice. Why in THE world would I risk ruining that at the age of 2?? The norm is to do a touch up around 5 when the facial growth has often out grown the scar and right before the child goes to school!

I have to ask this man what the projected plan of care would be for Katie since her palate is intact before he thinks to talk about surgery beyond lip revision. He says she will have no speech issues or ear issues since she has an intact palate. Oh REALLY?? He can tell all that from a handful of questions, and a one minute exam that did not include looking in her ears? So now he's a surgeon, an ENT, audiologist, AND a speech therapist!! Yeah, RIGHT!

When we left his office, 5 minutes later, I was hopping mad! Seven hour round trip to see one doctor for 5 minute to tell me a lot of crap!

We came home and I went back to my ped and told her how unhappy I was. I got a referral to a local ENT and audiologist with in the week. Katie failed the hearing test which might happen due to her age. But the ENT agree with me that the only way to know was to do an ABR test under general anesthesia.  So in June we did exactly that. The ABR came back normal (yeah!!), however, she failed the test to check for fluid/pressure in her middle ear.  So while she was under anyway, they placed tubes in both ears. Thanks Mister Big-Shot-Plastic-Surgeon. You were so right that she wouldn't have ear issues. NOT!!

With that taken care of, I went on a search to find another cleft team so I could fire the crazy guy. At this time, my ped mentioned that she had heard of a new doctor in a nearby city (under a 2 hour drive) who did cleft repairs. I did some research, and it turns out that he was once the co-director of a cranio-facial team at a LARGE children's hospital. He had come to this regional hospital to start a cleft team there. We were able to get in to see him in late Sept, and I am sooo happy! He took time to talk with us and answer questions. Turns out he has a son born with cleft lip/palate adopted from Henan, China!! He agreed with me that there was no reason to touch Katie's lip for sometime, perhaps not until her bone graft around the age of 9. I'm SOOO much more comfortable with this doctor. We will go back around the first of the year for a full cleft team meeting and they will evaluate Katie's speech at that time. I'm not worried since she has over 50 words and people outside of family can understand a lot of them. Also early intervention found her to be on track in speech. But I now feel certain we are in good hands.