Wednesday, November 7, 2012

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

2 comments:

  1. As medicine continues to evolve, they will hopefully develop another method for BAHA implantation that's less continuous maintenance. Good to hea all the info though & that the doctors are giving you as much info as possible. I can't imagine what it would feel like as a momma to know your little one will go through as many surgeries at a young age, as you said. BUT know there are so many people who love all three of you and are ready to support you all in every way possible. Great post, Kelsey!

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  2. Hi, thanks for stopping by my blog and leaving a comment. Auggie is so cute!!!

    Is he on the TCS Around the World map yet? I dont recall seeing him.

    You mentioned discomfort after rib graft surgery, I certainly still get an ache from time to time in my ribs from my jaw surgery 20 years ago. The jaw doesn't ache at all. But my hubby would say that's because I am constantly exercising it!! Haha

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