Pre-op Day

We went to Dr. Reinisch's new office at Cedars Sinai Medical Center today. It's *nice* with a beautiful view over the Beverly Hills area. You could even see the Hollywood sign from a patio adjacent to his waiting room. Dang.

So, he looked at it, and pointed out something that I hadn't really considered: the grafted skin on her ear has always had a flaky dryness to it. I always just assumed that that was the nature of the graft. Come to find, that we should have been cleaning it out a little to help the skin stay smooth and healthier. Because it's a graft, it's simply not going to behave like "native skin" as he called it, but that there are things we can be doing to keep it smoother, less dry, and generally healthier. Now to just get her to let me. That's a MUCH bigger challenge than you might think. Feisty little thing!

After the appointment, we went to the Mecca for Little Girls: the American Girl store at The Grove. Here's what surprised me: she knew exactly what she wanted - the colonial girl, Elizabeth - and once we found her and one outfit, she was pretty much done. Crazy, huh? We walked in and the 'concierge' (yes, they have a CONCIERGE) said to plan for 2-3 hours. My little speed shopper was done in less than an hour.

Here's a few pics:



She's had a grand old time with her new friend since we got back to the hotel this afternoon. After, of course, a giant bowl of spaghetti at Mulberry Pizza Company (good):



So, tomorrow morning we have to be at the surgery center at 6:00 am. Those of you who know me realize how horribly painful that's going to be for me. Worth it, though, huh?

The surgery is expected to last approximately 1.5 hours, and as I mentioned in a previous post, there will be a skin graft. The usual wound care stuff that comes along with these surgeries - sponge, dressings, etc - will occur, but at least we have the advantage of a "been-there-done-that." We have a clue on what to do, when to call, and how to clean it. That's good. The first time you have to deal with caring for a skin graft site or surgery site can be humbling.

So, I will be updating tomorrow. Thanks, as always, for reading.

We're here!

We're officially in Beverly Hills. We traveled this afternoon and got to the hotel around 7:30. It was tough leaving our little boy. I miss him already.

It was nice, however, to travel with a slightly older Kelley. She was much easier this time. First off - her car seat is half the size. (Backless booster.) That in and of itself made the trip a little smoother. Beyond that, she's just that much older and better able to handle long waits, etc.

Tomorrow morning, we will be calling Dr. Reinisch to schedule a time for a pre-op appointment. I don't think he sleeps. I asked him, "do you sleep?" and he said "not much. I'm up by 5:00."

We aren't.

So, at any rate, we'll be seeing him for a pre-op appointment tomorrow, and then off to The American Girl store. Kelley is beside herself with excitement over that.

Monday is the actual surgery, and I will update about the pre-op. I'll add some pictures of what we are up to. :)

As always, your thoughts, prayers and love is welcomed and appreciated.

Long time no update.

My sincere apologies for that. In all honesty, we needed a bit of a break. A taste of normal, if you will. But, in what's been a typical cycle with Kelley's ear reconstruction, we're able to go for a little while, life as normal, and then things start to bubble up to the surface and we're back "on."

The break was nice, actually. But, the break is over.

Kelley "graduated" from Kindergarten in June, and started life as a big First Grader in September. Over the summer, we had her hearing tested once again per Dr. Roberson's recommendation, but we found another audiologist. Our previous doctor here in Portland kinda kicked us to the curb, indicating on our last visit that he didn't "need" to see Kelley anymore. We can take a hint. Personally, we feel it was because we chose a different doctor to perform the canalplasty. But - ours is not to speculate. We found another audiologist who is great - a real pro - and the Otolaryngologist he shares space with doesn't perform this type of surgery. No conflict.

So - the hearing test. Kelley got a so-so result, which means that her hearing has leveled off to where it will likely be from this point on. After sending the information to Dr. Roberson, his recommendation was that Kelley is NOT a good candidate for the titanium implement that would replace the middle ear bones, which I believe I have described before. The reason being is that her hearing loss is in a range of frequencies that the titanium implement isn't known to help.

Well, we don't want to put her under and give her another surgery, only to have the attempt fail.

The current recommendation is a hearing aid. And honestly, that's been a tough one for John. He was really hoping that the results would indicate she would benefit from the titanium implement. He's disappointed, and worried about Kelley needing a hearing aid. I, on the other hand, want to get things taken care of as quickly as possible, so Kelley can hear the world like her peers do. She's missing some things, and that makes me sad. One of the things that really brought this to the forefront again, however, is school. Her teacher has told us that she struggles to stay focussed, and she believes it's because she's not always hearing everything. We've gone as far as we can now without aiding her hearing and teaching her to compensate. It's time for action.

So, the difficult emotional side to this, is that for the first time since she was born, John and I were on different pages in regards to her care. I was forging ahead, and he was still working on accepting where we are, instead of where he was hoping we would go. We are working together again now, but it was a little painful for both of us.

In September we took Kelley in for a hearing aid fitting, and realized that she does, in fact, need another plastic surgery with Dr. Reinisch. He refers to it as "Stage 2." What this involves is reshaping her ear canal opening a little to make it more round. At the moment it is almost a triangular shape. She also needs to have a deeper sulchus, which is the pocket behind her pinna. These two refinements will allow her to be able to wear a hearing aid comfortably and without the fear of it falling off because it's ill-fitting.

Without these refinements, she is not able to keep a hearing aid in her ear without getting a squeaky feedback for the in-the-ear style aid. For the behind-the-ear style, the sulchus isn't deep enough to keep it in place.

Which leads us here: On November 29th, we will travel to Los Angeles to see Dr. Reinisch. Her Stage 2 Medpor surgery will take place on December 1st, and we will return home after a post-op appointment on December 4th. There is a minor skin graft involved, but certainly not like she had for her Stage 1 surgery. Dr. Reinisch will harvest the skin needed to deepen the sulchus from the same place on her abdomen, so there will be no new scars.

The last time we traveled, Ryan was a little tiny guy - 4 months old. Now, he's turning two in a week. We made the decision that giving all of our attention to Kelley is really important right now, and keeping a two year old happy in a hotel room would make that difficult. So, we're traveling without him. Grammy and Papa will come to the rescue here. I don't want to leave my little guy for that long, but I think it's best.

We will give updates on this blog throughout the process, and I promise I'll be a more frequent updater. :)