Sunday, February 19, 2006

Discussion with Dr. R. about Stage 2 Surgery

We just got off the phone with Dr. R. He took time on an early Sunday morning (7 am his time) to talk to us about the second surgery. We realized that we didn't understand this procedure as much as we had the first one, so I contacted him and he arranged for us to call him at this time.

To explain what we learned, here is the latest picture of Miles' ear from Jan. 24th:

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What Dr. R. will do is take all the extra tissue that currently looks like little blobs and use it to form the tragus and the new "ear canal" (or what looks like one). The tragus is the little pointy piece of tissue at the front of your ear canal. I googled "external ear anatomy," since I'm not explaining it properly and here is a diagram that labels the parts of the external ear: Ear.

Dr. R. will "invert the tissue like a sock," using his analogy, to form what will look like an ear canal. He said that the more of the extra skin tissue that Miles has, the better, since the skin tends to shrink. Miles has quite a lot of that extra skin there, as you can see from his picture above, so I think we'll be in good shape.

He may move adjust the ear lobule: it may need to come in closer to the cheek or be moved up.

He sometimes puts in extra skin on the fulcrum--the top of the ear between the head and the helix. Sometimes it gets a little tight and pulls the top of the ear in towards the head, pushing the bottom of the ear out. He couldn't tell from the pics we sent him, if Miles would need that or not. My suspicions are that he won't, since this doesn't seem to be happening to the ear.

We asked him about the scarring on the helix, that you can see a little better in this picture:

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and he also brought up the picture we sent him of what we call "Miles' c-section scar," where the skin graft was taken and which is currently quite large and red. Dr. R. said that you don't really see a lot of improvement with scars until around 4 months (which we're just about to hit) and improving usually continues for 12-18 months. So these sites should continue to fade and look better. He also noted that the pinkness of the new area will improve. Currently there is a lot of vascularization there and "a lot of chemical processes" going on in the healing process. As the new ear heals and over time, some of those new vessels go away and the "chemical processes" lessen, and the ear will become less pink. I really haven't thought it was that pink lately, but the other day Miles told his teacher that his new ear was "too pink," so apparently it has bothered him somewhat.

I also mentioned Miles' extreme sensitivity about his new ear and touching it. Dr. R. said that was very common, especially in younger kids. He suggested that we "desensitize" him by gently rubbing lotion onto it when we're watching tv or reading. We've done some of that, but will do more. Most of what we've done has been at bath time.

The 2nd surgery should last about 2 1/2 hours. Dr. R. stated that "we do a lot of fiddling around." There will be no cups or bandages afterwards and he said that the child has very little pain after this surgery. There will be a sponge in the new "canal" that will fall out on his own after 1- 2 weeks. We should then try ("try" being the operative word with a not so cooperative Miles) to have him wear an ear plug in it to retain the shape for some time afterwards.

I was very pleased with our conversation and feel much better educated now.

Miles had his 6 month appointment with his otologist on Thursday. His hearing in his left ear continues to be really good. I'm amazed that they can get a read with such little kids, but they must be trained well. Miles was a typical 3, almost 4 year old, and was very easily distracted during the testing. The most mortifying part of it--but funniest--was when he said "Excuse me. I tooted." I just about lost it, because I could only imagine how that sounded in the audiologist's ear phones!

The otologist had never seen a medpor ear before, only rib grafts. He was VERY impressed. He was amazed at how natural it looks and commented about how the ear projects from the head more like a "normal" ear (I hate that word!), noting that this doesn't occur with rib graft ears. So it was really assuring that we made the right choice for Miles. I was so happy to have an esteemed specialist be so impressed with Dr. R.'s work. I hope that our otologist will see more medpor ears in the future. I can't believe we're the first.

The otologist referred us to an ENT in our area, so we won't need to go back to him, but should just need to see the ENT once a year for a hearing test (rather than every 6 months as we have been doing).

Tuesday, February 14, 2006

Happy Valentines Day!

Here are the boys eating the heart cookies we made:

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Miles had an exciting weekend. He had his first haircut since the surgery. I was very worried about it, because he has always freaked out at haircuts and now he's so sensitive about anyone being anywhere near his ears. But he did great. I was so proud of him! We got his hair cut really short, because he still has bald spots where the cup adhesive was and the stitches were. I'm worried the hair isn't going to grow back. As a reward for being so good, I took him to his first movie: "Curious George." He really enjoyed it.

Jack is becoming quite the talker. The other day he said his first distinguishable sentence: "I'm coloring." Contractions and conjugated correctly! Last night as I read a book to him, unprompted he pointed to several pictures on the page and correctly identified bear, star, dinosaur (!), and cloud. He's getting so big.

Have a fabulous Valentines Day!

Tuesday, February 07, 2006

We love Southwest Airlines!

They are giving us 3 tickets at no cost to go to LA for Miles' second surgery! We applied for the medical transportation assistance program. It was incredibly easy--just a one-page form for us to fill out and one for Dr. Reinisch.

If you need information on this program, please feel free to email me.

Southwest Rules!