Auggie's Adventures: Annual Craniofacial Check Up

Auggie had an appointment in Austin Monday morning with Dr. H. Never heard us talk about a Dr. H? Well, that's because he originally saw Dr. K and we really liked Dr. K. Between March and now, Dr. K moved on to work with only adults. We were disappointed to hear that (or at least I was). Dr. H is now Auggies craniofacial specialist. When we finally saw him (I'll explain that in a minute), Auggie had already fallen asleep so he tried to get a good look at him without waking up. The only time Auggie woke up was when Dr. H put the tongue depressor into his mouth to look at his palate. Auggie did not like that! He fought his nap until he was in the truck for our ride home around 2.

We also saw Dr. Z (ENT doctor), Mary (nurse), Ashley (speech therapist) and Nick (social worker). Everyone said they were glad to see how well he's doing. Even some of the nurses, who we haven't seen since March, remembered Auggie.

Auggie's appointment was scheduled for 11 am so we arrived about 20 minutes early. We didn't actually get back in an examination room until after 12:10! I was so annoyed. They ended up having a consult move from New York to central Texas so see Dr. H for Treacher Collins Syndrome. It would have been nice if they would have told us that. It was hard enough keeping Auggie entertained for that time without letting him crawl on the floor.

Dr. H said he looked great and he doesn't think any surgeries or procedures need to be done until he gets his ears done (which will be around 7-10 years old). We're definitely happy about that! Dr. H talked about his jaw lengthening surgery being put off until he's done growing (around the time he's a teenager). I wish we could do it so Auggie doesn't have to remember it but I also want it to be done once and not have to redo it. Dr. H believes with the genetic make up and growth of TCS, once the bones are fixed, they want to automatically go back to their original state regardless of the surgeries. So we'll be waiting for the jaw distraction.

Mary and Dr. H didn't think it was necessary for us to come back until next November (unless we have any problems before then). We went from seeing them every 2 weeks when Auggie was born, then every quarter and now it'll be annually! Great!

We also talked to Ashley, the speech therapist on the craniofacial team. She wants us to come back in May to see her for a speech evaluation. She was happy with his high pressure sounds (Gah and Huh) since he was diagnosed with a bubble palate when he was born. She wants us to work on Da, Ba and Pa sounds with him. But she was satisfied with what he's doing now.

Hopefully once he starts seeing the speech therapist from ECI, he'll get some more practice. And hopefully, those visits start immediately after our appointment on the 15th and start twice a week.

Last week, we ran into our first insurance issues in a few months. Auggie was supposed to meet with a pediatric dentist along with Dr. H yesterday but the dentist isn't in our network. We've had this appointment scheduled for at least 3 months and Thursday was the first they checked on our insurance. They offered a 40% discount if we paid out of pocket but that was still almost $300 for a fluoride treatment and check up. Auggie's teeth aren't bothering him more than usual so we're going to wait until we can upgrade our insurance to see if the dentist is in the network on that plan.

We also found out our insurance doesn't want to pay the amount they said they would for Auggie's BAHAs. In early October, we found out Cochlear still hadn't released the adjustable band for the BAHA so we're still waiting. We decided to go ahead and order the processors (the BAHAs) without the band- I could make something, couldn't I? So the audiologist called back on Thursday and said the insurance won't pay as much. The office is trying to get them back down to what they had originally agreed on. I just don't get it... We want the BAHAs, so let us pay for them. If they're not going to go down, then just let us pay for them!

What makes everything even more frustrating is, we need to send Auggie's current BAHA in to get serviced and tuned. But how do you willingly take away your son's hearing for weeks and not know exactly how long it'll take to get back? We were hoping to have his BAHAs by June. Well, that came and went but thankfully, we met Judy through Facebook. She let us borrow the one he has now. Then we thought he'd have 2 by his 1st birthday... Well, that's Thursday and I highly doubt we'll have them by then. It is all so very frustrating. We decided we'll most likely send the BAHA next week so maybe he'll have it by Christmas.

I guess that's all for new developments... for now. Let me know if you have any questions or anything isn't too clear!