Annual Craniofacial Appointment

Auggie's yearly appointment in Austin was on Monday. It went well. Dr. Harshbarger (the craniofacial surgeon) said Auggie looked good. Since we don't have any issues with snoring or trouble sleeping, he said we can push off the jaw distraction. He's pretty confident we won't have to worry about that until Auggie is done growing (past the teenage years!). He pointed out the deficiencies in Auggie's cheeks (his dimples) and said we could opt to do a procedure on them if we'd like. But like the jaw distraction, he'd like to wait until Auggie is done growing so there's a smaller chance of the surgery being rejected. But that's if we opt to do the surgery.

We talked to Dr. Zappata (Auggie's ENT) and Dr. Harshbarger about doing ear reconstruction since it sounds like that will be the first few procedures Auggie has done. We have a few options: 1. Leave his ears alone; 2. The Rib Graft Surgery; or 3. Medpor. Feel free to click the links to find out more information. I have added some here but The Ear Community is a great resource. There are even photos of before and afters if you're interested in looking.

Tim and I are leaning towards Option 3 because it is offered earlier (as early as 3 years old, before school!) and there are less stages performed. Medpor's structure is from a synthetic material and then covered with a skin graft. The rib graft surgery is performed between ages 6 and 10 and requires cartilage to be removed from Auggie's rib for the structure of his ear. Some older patients have said they still have discomfort from the rib graft surgery years later. I would think with the Medpor you'd be more likely to have symmetrical ears since you're using a synthetic material. I haven't done much research into it yet because I still get a bit emotional knowing Auggie will have to go through at least 3 surgeries at a young age. But anyway! We'll most likely start working on getting in touch with doctors next year to do more research on where we should go for ear reconstruction and who should attend to Auggie. We just need to find the right doctor for Auggie. So far, we're very satisfied with the team Auggie sees so we'll see if we stay with them.

After his ear reconstruction, we'll deal with implanting his BAHAs (another informational link). That's a couple procedures in itself! We've heard rumors that Cochlear is testing a magnetic abutment. The Oticon processor offers the option of a magnetic abutment instead of a steel post. Some people prefer the "sound" of the Cochlear processor compared to the Oticon processor so I'd love to keep Auggie with the Cochlear processor. We're really hoping by the time he is old enough for the implants, Cochlear will offer a magnetic option. The "steel post" option just doesn't sit well with me since you have to clean the skin around the post so it doesn't get infected or grow over it. That's even after the incision sites have healed. The FDA mandates children 5 years old and older are approved for the surgery so we have a few years to wait.

Aside from discussing our options, the visit on Monday was good. Auggie was a bit shy and restless with Ashley from Speech Therapy. He didn't want to cooperate with her or her grad student so we'll go back May of 2013 for another evaluation. She said he sounded like he's progressing well but wants us to continue to go to Speech Therapy at least once a week. Now that our insurance has approved the therapy in College Station, we can bite the bullet and start back up. What's another monthly bill, huh? We missed out on seeing the dentist since she was at a conference but Auggie will see her in April. Can you believe that's her next opening?? Wow! We made sure they put us on their wait list in case someone cancels.

We did receive some good news today, though. Auggie's left BAHA should be here on Friday! It's in Tennessee right now! YAY! What's that- you didn't know he lost one? Sorry, I forgot to update about that one. Auggie lost his left BAHA while we were in Giddings a few weekends ago. He was riding on the Gator with PawPaw and his cousins and when he came back, it was gone. I knew as soon as I saw he only had one on, it was a lost cause. That "champagne/blonde" BAHA is the same color as every dead piece of grass and rock out there! The left BAHA was the same one we sent in for repairs a few months ago. Luckily, the replacement plan covers one complete replacement and unlimited repairs for 2 years. We dodged that expensive bullet! I'm ready for Friday! Well, not too ready since he'll be TWO on Saturday! I can't believe our Little Bear will be two!

Well, I didn't think this update was going to be so long! If you have any questions, feel free to ask in a comment or however you like to get in touch with us! I'll leave you with some Halloween pictures! Enjoy!

Waiting in line at the first house

Daddy and Auggie in between houses

Playing with a mini light

The family

Our little train conductor playing with trains

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! 

Looking at Gramma... "What to keep in my mouth?"

Making faces with Gramma last Thursday

Watching Jeopardy with Daddy

Strawberry-Kiwi yogurt face

He has so much fun putting things in buckets

Playing with food wrappers. He had so much fun!

"Aunt" Kayla let him destroy her DVD collection

He wouldn't take his eyes off the lady cutting our turkey at the deli

I ♥ this picture

Who Knew Toys Would Save Your Sanity?

As I type at 6:50 am, Auggie is being lulled to sleep by a 2-slide projector and 10 minutes of music. THANK YOU, Fisher Price! Auggie really enjoys his crib toy- as seen HERE. The projector comes off so we've been laying it down on the bed so the slides are projected closer to Auggie's face. He usually falls asleep watching and listening to it, or so I think! ;) Auggie also loves his vibrating rocking chair. He can be so fussy in our arms and we can try consoling him by patting his butt or rocking him from side to side and then the moment we put him in his chair and turn it on, the little boy is silent! Thank you, Aunt Karen, Uncle Myron, Uncle James and Aunt Kathy! We received two of them so y'all all get credit for the awesome gift!

Sorry for not posting Friday or Tuesday. My mom came in Thursday afternoon and we had planned on going shopping all day Friday since Tim went down to south Texas to go hunting. I woke up around Auggie's 3 am feed and I had a fever- I felt terrible! I was all achy and cold or super hot. Around 9 am, I took my temperature and it was 100.4... later on it got to 100.7 so I laid around or slept for most of the day. Thank goodness my mom was here! And, well, the weekend, Monday and Tuesday just flew right on by- our blog wasn't on my mind much!

I tried getting a good picture of Auggie holding his head up but he was just too close

As I said before, my mom came in Thursday and spent most of Friday with us.It was nice having her back in town! Sunday, Tim, Auggie and I went out to Tim's deer lease near Madisonville. It was our first trip out as a family- well, besides doctor visits! It was nice. Auggie doesn't mind being in his carseat so we didn't have too much of a problem there. He didn't even mind going over the ruts in the ground! You should feel how huge they seem when you're in the truck.

Our trip to Austin on Monday brought some good news- We don't have to go back to that specific doctor until March! We saw the craniofacial surgeon who thought Auggie was doing great. He was happy for us that things were going so well. We met Auggie's dentist who is in the same office as the craniofacial surgeon. She'll be with the team of doctors Auggie sees so she can oversee the health of his teeth and make sure he doesn't have unnecessary procedures done. We won't see her for another 6 months to a year. We also met with the speech therapist that works on the team. She'll help Auggie develop speech correctly. Apparently, we'll have to see her once a week when he's older- never thought I'd see Austin that much! We won't see her again until he's 18 months old... unless he's not babbling like he should when he hits the right age.

Our friend, Liz, stopped by on Monday. It was so nice seeing her! We wish she could have stayed longer! Auggie liked her pretty quickly. He only fussed a bit but I'm sure that was normal. :)

Liz holding Auggie

Well, I'm off to bed again. I'll post a few more pictures on this update this afternoon.