week and a half post op stage 2 - pic warning!

Ok, I know I had a huge breakdown there, but I needed it. I'd been holding it in since shortly after she was born. We're reaching the end of what feels like a very long tunnel, and I needed to partially put the burden down now that we are fairly certain we are done with surgeries for her. It was an old-fashioned cleansing cry, know what I mean?

That said - she is healing nicely. We took the sponge off on Monday evening, and we were a tad stunned. It looked pretty raw. After a reassuring e-mail from Dr. Reinisch, who told us that this was a typical look for right after the sponge comes off, we went about our business.

The steri-strip on her "donor site," which is another way of saying skin graft location, came off this past Sunday evening, and it's healing up fine. It's a little rougher looking than the after the stage 1 surgery, but I'm continually amazed at how quickly and well her little body goes to work healing itself.

So, now, she's basically just itching and scratching, scratching and itching. The stitches are the melt away kind, and once they start to work their way loose, they do itch something awful. It's constant work keeping her little mitts off of them.

As for school, most of the kids have been really cool about it. If there's been any freak outs, I haven't been in the loop on them. She has gone to the office for a few things since we've been home. All essentially false alarms. She did start to bleed a little during library time this week, but it stopped quickly. I think it was caused from the big headphones they wear during computer time. That kind of thing wasn't a problem when she was in preschool!

So, here's the latest in pictures:


This is just prior to John removing the sponge.....this is one week post-op:



This is immediately after the removal of the sponge:



You can see that it's standing out quite a ways from her head and seemed exceedingly deep to us. However, within hours it had started to work its way back toward her head. Also, Dr. Reinisch assured us that they tend to overcorrect a little because the donor skin shrinks up as it heals.

A better look at the depth:



And from under - the ear seems to be in a slightly more even spot with the other ear now.



Here's the "donor site" from her stomach as of last Sunday:




And our sweet cutie:



And here she is with Dr. Reinisch. We are so incredibly grateful to him for all his help. Really, there aren't words I can find.



Until next week....

post op

And I'm emotionally wrecked. Six years of build up, trying to be strong, figuring out what to do, watching carefully, testing, surgery, phone calls, grief, acceptance, and everything just came spilling out in the form of tears dripping on my husband's shirt.

When your child says, "I don't like this. It hurts. Why did I have to have surgery? Why was I born without an ear?" and you don't have an answer, it's quite possibly the most painful feeling I've ever experienced.

I've wanted, since the moment she was born, to take this from her and bear it myself. So has John. But, this is her journey. My prayer is that she'll come out of the other end of this path stronger, wiser, and full of hope, and the reason for all of this struggle will reveal itself to all of us.

All the wise thoughts that I have don't take away the kick in the gut of your daughter crying and asking why she was born the way she was.

I'll update details on the surgery tomorrow. I needed to put this out of my head tonight.

Operation Day!

So today was the big day. We woke up at 5:00 am, (ouch!) and got rolling. Adrenalin is a strange thing - on any other day I would have been totally dragging. Today? Up, going, and ready to roll when I needed to be.

We got to the surgery center and checked in. They have a kids' room, so that's certainly handy. We had to wait for a little bit, but not too bad.

Dr. Jumper, quite possibly the nicest guy EVER, was Kelley's anesthesiologist again, and he came by shortly after she had taken the Verced. Verced, or, as Dr. Jumper calls it, Milk of Amnesia, is pretty much the standard for "taking the edge off." It's pre-anesthesia, I guess.




You can see by the pictures how much she LOVED taking the Verced.

Well, once again, we've learned that Kelley should NOT join a sorority at a party college when she's older. She's hysterically loopy when she's on this stuff. Quite humorous. She's very giggly and goofy, using her arms in big gestures....Wait - who am I talking about? Me? Or my daughter?

Anyway - after a time she was wheeled back and the surgery began.

She was finished around 10:00 or so, and wheeled back to recovery around 10:15. We were there waiting. This is the reality of surgery for your kid:


I wouldn't recommend it. It can be pretty gut-wrenching.

The good news? The surgery went smoothly, and all seems to be fine. Here's some details:

1) Dr. Reinisch took a skin graft from the same area as stage 1 reconstruction, only a smaller area. Unfortunately, it's seeping blood. Yew. The good news, though, is that it is a MUCH smaller area, and it doesn't have the marcaine suction dealie. Steri-strips for about a week, and they should come off naturally.

2) The area is secured by a sponge and some sutures:



The good news? We get to take the sutures off ourselves. Yay. Not really. Hopefully, with a little help from Papa Gene, that will go smoothly. We are to take them off in about a week.

3) She can resume normal activities in about 2-3 weeks.

4) Interesting little side note: apparently, there was a large plug in her ear, formed from skin and other biological 'stuff.' Dr. Reinisch said "I'm surprised she could hear. It was quite large." Her ear doesn't produce wax naturally, but apparently it does produce something. Not sure what. At any rate, we apparently should have been having her ear canal cleaned out by an ENT every 4-6 months. This is something that wasn't told to us at any time. Granted, we had some difficulties communicating with her local ENT, and I'm wondering if that is where the breakdown occurred. She went for quite some time without specialized care.

So, what that means is that it's quite possible her last audiogram was occluded by the plug. When we return to Portland, I will schedule another audiogram sometime in January so that we can get an accurate audiogram.

So, tomorrow we have a post-operative appointment with Dr. Reinisch, and then we are going to try to change our flight and head out a day early. It would be really nice to come home.

Until tomorrow....thanks for reading and for your thoughts & prayers.

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. :)

Update!

Kelley's hearing test was earlier in the month, and the results were, honestly, just ok. Her 'surgery ear' as she calls it, is about 45% of normal. I need to look at the good side - prior to her surgeries, it was about 5% of normal.

So, we faxed the results to California Ear Institute, and Sheri Byrne-Haber called a little more than a week later. Apparently she had to catch Dr. Roberson before he left for Nepal to do some work. Busy guy, huh? Anyway - she told us that Dr. Roberson recommended we have her tested again in three-four months, and send the results again. In the meantime, we could have her fitted for a kind of hearing aid called an Oticon Delta.

Now the dilemma. Do we proceed with a hearing aid fitting, or do we wait until her second surgery with Dr. Reinisch? Dr. Reinisch is going to be making some adjustments to her ear that could affect how the hearing aid fits her. We haven't made up our minds yet.

If you would like to read a little bit more about Sheri Byrne-Haber, who I think is amazing, read this article about her. She is a person you definitely want on your side.

Update!

Well, our budding star did great at her Christmas program....we took a movie of it, but figuring out how to post it here would require more technical skill than I have time for, so we'll have to save it for another day.

Pics! The ear looks great - we are so happy. After a brief communication with Dr. Reinisch, we are likely going to be scheduling a second surgery very soon. Her ear does need some refinements. The posterior sulcus (pocket behind the ear), the shape of the canal opening (which at the moment is not very round - kind of jagged almost), and the tragus are the areas that need refinement. That, and the strange little hairs growing out of her ear. Thankfully she doesn't seem to notice or care. According to Dr. Reinisch, this is a much less invasive surgery that doesn't require an extended stay or even any hair shaving.

Now the fun begins - we've changed insurance companies since March 07, so we are going to have to tiptoe around that minefield to find out exactly what has to happen for pre-approval for the surgery, percentages, etc. We've been there a few times now, so hopefully I've gained enough knowledge to get through it with our pocket book relatively unscathed.

One interesting thing to note - the ear is pretty stiff. It doesn't bend like a natural ear does. Apparently this is normal for this type of implant. That doesn't bother Kelley, either, so I guess it doesn't bother us.

As for her hearing, she was actually scheduled to have a hearing test today, which we were to send to CEI for Dr. Roberson & Sheri Byrne-Haber to review. Unfortunately, Kelley has come down with her winter sickness, and we have to postpone. She's coughing, sniffly, running a low fever, and is really tired. Probably not the best of circumstances under which to test. We'd like to get the best results possible, obviously, so we have the best information going forward. It is likely, however, that if we don't have improvement from her July test, then we will seriously look into adding the titanium implement and seeing if that makes a difference.

She is doing well in school, and her teacher is very accommodating about where she sits in her classroom. There have been a few worksheets that come home that could use a little improvement, with remarks like "didn't follow directions." This makes me wonder what the circumstances were in the classroom when instructions were given. Was there ambient noise? Was someone else engaging her at the time? Questions for her teacher when we have our next conference.

And, we still haven't changed our minds on the SoundBridge. Right now we are thinking that it is a 'no' for us.

The final two pics - we had a snow day today. I bundled everyone up and let them tromp around outside. Ryan was totally fascinated by the snow, too. Kelley was showing him what snow was in the last picture and his face totally lit up. He had a great time.

Ok, so, now I'm going to take a little time to fancy up this blog. I've learned a few new tricks, so I'm going to add links in the margins & whatnot.

Always, thank you for reading and keeping up. The support we get from everyone in our lives is amazing.