Long Long Time Since Any Updates.

I found through this experience that I enjoyed writing so I started a blog on another site.

Well, as the journey for Kelley has continued, I've found that it's much easier for me to write in one place.

So, things HAVE happened since this was last updated, which you will find over at the new-ish spot - Random Thoughts From A Suburban Mom

Thank you so much for following.

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.

Kelley can sing..

I just love this. Her Kindergarten class is doing a Christmas musical, and she is singing the part of Mary. She has 2 decent-sized solos. Her K. teacher, who was formerly a music teacher, thinks she may have perfect pitch.

I find that particularly noteworthy, because when she was born, and we were just beginning to understand what we may have to deal with in being her parents, music was one of the things that I mourned. I thought that, if she was indeed deaf, that I would be excluded from sharing my love of music with her. It saddened me so much.

And here we are, 5 years later, she sings (on pitch!) every chance she gets. Mrs. Hilchen, Kelley's K teacher, said "it's amazing how strong her sense of music is, given that she has hearing loss."

We are so blessed.

Of course, we ran out and bought a video camera. Her program is on Sunday afternoon - I'll post a movie. :)

Busiest.Summer.Ever.

Heck, it's been over for a month and we're still running. Here's the latest with Kelley's ear and surgery.

As you can see by the picture, it looks amazing. We are so happy with the results. People who know that she's had the surgery comment on how "real" it looks, and people who don't know about the surgery don't even blink, even when she wears her hair up in a ponytail. The scars on the other parts of her body - outer thigh split thickness skin graft from her July '06 canalplasty - and the March '07 MedPor implant surgery across her stomach, continue to fade away, also.

She continues to be very open about her ear, showing people who ask, and telling perfect strangers "I got a new ear in DISNEYLAND!" People immediately look at me as if to say "Wha?"
So - here's the latest developments with ESD......there is none. After we received the Early Intervention paperwork from the district, Kelley and I did the enclosed "Ages and Stages Questionnaire." Apparently it's a test that Educational Services uses to gauge whether or not children are on-track developmentally. And, just as I suspected, she's just fine. She has absolutely NO developmental delays as a result of her unilateral hearing loss. I was also told by an ESD representative that based on her hearing test results, she would be right on the border for getting any assistance with a hearing device like an aid or an FM system, anyway, with the likelihood being no.

An interesting side note here before I continue.....one day this summer we were in the car driving to dance class. She said to me "Mom, this ear is loud and this one softer." It's the first time she's used words to describe the way she hears the world. For some reason that really struck me. She can now describe what she's hearing and how.

So, there we were, sort of adrift, trying to decide/figure out what our next move for her should be. We had basically been cut loose by her doctor in Portland, and ESD said "Sorry, can't help you...." When two awesome things happened....

Firstly, a dear friend who happens to work for a hearing aid company was able to obtain a hearing aid for Kelley without any cost to us. As soon as we put it in her ear, she said "Wow! I can hear on that side!" The only trouble we have with it at the moment is the fact that the portion of the aid that is supposed to hook behind her ear doesn't fit very well due to the fact that the area behind the pinna isn't as deep as on a natural ear, so it's a little unsteady. We haven't had her wear it to school or anything for fear of losing it. We're going to try to figure out what to do about that soon.

Secondly, in mid-September, we got a call from the California Ear Institute - the clinic and doctor (Dr. Roberson - so awesome!) who performed her canalplasty in the summer of '06. Apparently they are putting together a study for post-MedPor children. They are studying the hearing results of these kids after their MedPor reconstruction (what Dr. Reinisch did for us) and are finding basically two types of results......really good hearing and just so-so hearing. Kelley falls into the 'just so-so' hearing category. They've pretty much determined that the ossicles on Kelley that are fused together aren't fully bone - they are what Sherri Byrne-Haber (Dr. Roberson's go-to gal for this kind of stuff) described as 'fibrous.' Which means that sound is being partially absorbed by the fibrous tissue and not making it all the way to the brain.

We have one of two options.....the study they are putting together would involve a specialized middle-ear implant called a Vibrant Soundbridge. This is a great description and diagram of what this particular implement is all about..... http://www.vibrantmedel.us/archive/layout/patients.asp?

and this: http://www.vibrantmedel.us/archive/layout/patients.asp?SCREEN=patients&page=sbHow

John took one look at that page and said "No Way." I tend to agree. It seems like a huge step for her, and we would be making a decision that would seriously impact her in a way that years down the road she may not want....especially if technology continues to advance and alternatives are developed as she grows up. It feels very much like a decision that she should be able to make for herself when she gets older if she decides that her current level of hearing isn't sufficient for her.

So, the second option is to have another surgery. In this surgery, the middle ear bones (the hammer & anvil) would be removed, and replaced with a titanium implement that would possibly help conduct sound the way the ear bones are supposed to. This surgery would be much less invasive than the previous one performed by Dr. Roberson, so we wouldn't be stuck in a hotel room for weeks. Thank Goodness. At any rate - that is the option we are leaning toward.

Ironically, her Portland surgeon, when performing canalplasties, takes out the ossicles and replaces them with the titanium implement as a matter of course. When we were deciding on surgeons, we decided that it was too aggressive. You can't put them back in once they're gone, right? And we wanted to give her ear a chance to possibly do what it's supposed to do without putting a foreign object in it. We considered adding the titanium implement as a "step 2" if the canalplasty didn't give us stunning results.

So here's where we are: based on her most recent hearing test, Dr. Roberson felt that she has shown a steady improvement over her last 3 tests. He recommended that we have her hearing tested again in January, and to send him the results. At that point he would be in consultation with us on what he recommends. Back to a holding pattern.

That said, Kelley started full-day Kindergarten in September, and is doing great. We informed her teacher that preferential seating would be a good idea, and she's been totally willing and helpful. Kelley seems to be thriving. We're really happy with the school, too. (We chose a private religious school for her for a myriad of reasons).

She's doing wonderful, as is everyone else. And I have to say - what a little trouper our little guy Ryan has been through all of this. He gets carted around all over the place and he's just this happy little boy. He took his first unassisted steps on October17th. He's not running quite yet, but he's taking several steps at a time without holding on to anything or anyone. Plus, he's into everything he can possibly be into, as you can see by the picture of the kitchen.

I really hope someone is still reading this! As always....thank you for reading and keeping us in your thoughts.

Man, this ESD thing is going to be a quagmire, I can tell already...

Thankfully, the local ESD was very prompt in getting back to me. I made the first call to them on Monday and received two calls back on Tuesday. Here's the problem:

She's almost school age. So, even though at this point she is in the "Early Intervention" age group, by the time they work through their backlog, she won't be any more. Then, once she turns 5, she'll be considered school age and she needs to get a referral from the school in our boundaries. You know, the one we're not going to send her to? Apparently she still qualifies for assessment and then possibly services, but I have a bad feeling that by the time they actually GET to her assessment, school will have already started. If we are going to get her a hearing aid, at this point it's likely we will have to do it through her doctor. The same one that said "go through your local ESD." And heaven only knows if Kaiser/CCN will cover any of it. They aren't exactly known for their flexibility on that front, you know?

The very nice people that I've spoken with at ESD also told me that whether or not she receives a hearing aid from them will be determined likely on a sliding scale based on 'need.' (meaning that people with fewer economic resources are first in line for assistance.) Well, we're very fortunate - we have economic resources. So, the bulk of the cost will likely fall upon us. This after her surgeries, which were MOSTLY covered, but not 100%. Ouch.

I just can't help but wonder how long this will take, and if we are going to have to circumvent the ESD's assessment process so that she can have an aid and be accustomed to wearing it by the time school starts.

So, we have another decent-sized hill to climb.

On the healing front - her scalp thing is mostly healed. We're having a heck of a time keeping the dressing on the one last spot that's not quite healed, but we're working on it. It's actually looking really good for the most part. Still can't tell if hair will grow there.

So, the pictures - Kelley and Ryan started playing with this box that I got from Costco. You know, you can spend $1000 on toys, and there's still nothing quite like a box. The first picture is them playing in it, the second is Kelley "flying" in it, (she called it her 'Box Plane.') And the ladybugs have started showing up on our neighbor's trees, and Kelley just can't stay away from them. I call her The Ladybug Whisperer. :)

Really bummed today.....

Kelley had a hearing test today, and although she has shown improvement, her doc is recommending that she get a hearing aid through the local ESD. He estimates that she is at a 40% loss on the surgical side. (She's fine on the other). Starting K in the fall she's going to need to be able to orient where sound is coming from as best as she can - and a hearing aid is the best bet.

Upon reading through the ESD website, I'm feeling a little overwhelmed and sad at the prospect of having to navigate my way through all of it. We don't see her as different or needing any "special" considerations, and it feels like a kick in the gut to be referred to ESD. I know that they provide a range of services and they are there to help, it's just a painful reminder that we have a unique situation.

The alternative is another surgery where they take her middle ear bones out and replace them with a titamium implement to try to impove conductivity. There's no guarantees that it will do anything for her, though, plus we would have more surgeries.

Ho Hum.

WAAAYYYY TOOO LONG.....sorry for the delay

Life has pretty much returned to normal around here. The healing has gone extremely well, and Kelley ear is looking more and more normal (as far as size is concerned) all the time. She's able to wear sunglasses and they stay on. It's the little things, I tell you.

She has had one complication recently that required a call to the surgeon. At one of the incision sites on her scalp where they took a graft, we noticed that there was a scab - a pretty significant one. We didn't think it was anything major, and that it would heal on it's own - like when you fall of your bike and skin your knee, you know? Eventually it goes away.

Well, someone that we know and love (*ahem*Kelley*ahem*) picked on it. That's when things got interesting. It started this strange oozing and whenever we went to look at it or do anything with it, like brush hair away from it - skin would come up. It was enough of a concern that we took a pic and sent it to Dr. Reinisch. He called back almost right away, and advised that we do something called a "damp-dry dressing." Basically, he said that we need to get a small piece of cloth gauze wet, apply it to the site and the ooze (pardon the expression) would adhere to the gauze. We were to do this about one hour before bed and then again in the morning. When we take it off, he advised that we should do a "hard pull" which meant that it was ok to just basically yank it. It was interesting because doing that ran counterintuitive to what you would expect when caring for a wound. Usually a scab is a good sign.

Well, apparently on the scalp, it would forever ooze and make a scab - skin would never really form on the site. So, with every "hard pull" it was actually healing the site. We've been at it for about a week now, and it's getting much better. And once again it blows me away how patient she is with it. She actually almost holds still. Of course, she can't TOTALLY stand still - that's asking the impossible of her. :)

So, the pics are ones that we took about a week ago - you can see that she swelling is pretty much gone, her hair is growing back, although I doubt she will get hair on the site that we are doing the dressing on - I think that will always be hair challenged. Still, it's not going to be noticeable because her hair is pretty long. Kelley also graduated from preschool a few weeks ago, so I added a picture of that event. And Ryan....in the last month he has started crawling, going from sitting up to crawling and back to sitting up, and he can pull himself up to a stand. Crazy kid! We're in TROUBLE. The last picture is one that Kelley took of him showing off his standing up skill.

That's another thing - we cut 3.5 inches off of her hair last month. What a total relief. It's SO much easier to deal with now. It made her look so big & grown up.

Dr. Reinisch will be in the Portland area sometime in the summer visiting his daughter (she works at Nike) and said he would take a look at that time and determine whether or not she will need additional refinement surgery.

I will post pics tomorrow of what the dressing site looks like in the morning. Thanks, as always for reading and checking back with me about this (Jodi-shout out to you for nagging!)

Cheers, friends.

Karen & Crew

A long awaited update..no picture warning this time!

Healing is going just fantastic. Life is returning to normal around here - which is so nice. Kelley is assuming all of her normal activities, except for swimming at this point. She can submerge her head in water, and bath time is normal, but she's not ready for a swim cap. She needs a swim cap because during her lessons she is learning to put her face in the water and when she comes up for air her hair is in her face. It interrupts the learning.

So, we're thinking that this summer she can start up with swimming again.

Last week we were saying goodnight, and she was feeling an area behind her ear that still has scabs on it. She asked "Why do I have crusty skin back here?" I explained that it was kind of like a chrysalis - that the scab is protecting the new skin growing underneath. Butterfly skin. She liked that explanation.

Her tummy scar looks fantastic, too. You can hardly tell that there was ever a cut made.

Ryan has had a big week - a tooth, his first cereal, almost crawling, and learning to put himself to sleep instead of using me. Our focus has shifted somewhat because of that, and honestly I think Kelley is having to adjust to not having all the attention on her now. We've had some struggles with that this last week, actually. She's getting better all the time, though.

The pictures are ones that I took last Sunday (April 15) and this Sunday (April 22). When she is looking directly at the camera her ear looks amazing. We are really happy with the results so far.

Again - all your thoughts and prayers and support has been amazing. We are blessed.

Cheers all!

Sorry for the long delay in updating...(pic warning)

The first two pictures that you see are just to not freak anyone out. I wanted to show the progression of her post-op improvement, but not make anyone sick! The second picture is one that Kelley took of me and Ryan. :)

What a crazy week last week.

So, we ended up having to do the liquified hematoma drain AGAIN on Thursday. It started to fill back up. Papa Gene to the rescue once again. This time, however, the draw was only 6 cc's (a little over a teaspoon). Once again she was really brave. No tears, only questions about the blood pressure cuff in the room with us. Papa Gene took Kelley's blood pressure while I fed Ryan after the procedure. She thought that was really cool - she had her own BP taken, then Papa's, then mine. Thankfully, we haven't seen the hematoma blood return.

So, Friday saw us at the end of the rope with the bandage and the ear cup. It kept slipping off, the adhesive on the ear cup was coming apart from the cup itself (but, of course, staying tightly glued to her head & hair) and everytime I came near her to try to fix it, she freaked. So, we got a hold of Dr. Reinisch, who said that she could be bandage free, and we set about taking all that junk off. What a trauma. The adhesive from the ear cup was REALLY stuck to her head, and she was really scared. We tried baby oil to loosen it - not much help. We tried a little spirit gum remover - bad idea. It stung. Finally, after an hour and a half of crying and screaming, the hair was washed, dried, and the bandage was off.

We were instructed to use hydrogen peroxide daily on the ear, and that the left over dried blood and stitches would start to dissolve. She wasn't a fan of the peroxide at first, but she's gotten used to it now. She has even started participating in clean up. I think she kind of likes the bubbly thing.

We had our first little OH! scare moment on Monday - apparently she got bumped pretty hard at school. It was an accident, but it sounds like it hurt and it probably scared her a bunch. She recovered ok, and now when we comb her hair in the morning she is telling me that she likes her ear, that she wants to wear her hair in a ponytail, and that she wants to wear earrings like Mommy. She's very open about it, too - she'll show your her "surgery ear" if you ask.

So, the pictures are of the Friday hairwashing/bandage removal,(1,3) then Sunday evening hairwashing, (4 & 5) and now today. (6) You can see that she actually has an abrasion/owie from where the ear cup adhesive was. I can't tell you how much it stunk trying to get that off. I actually had a little crisis of "Was this the right thing to do for her?" John talked me down, like he usually does.

We're amazed at how good it already looks. Tuesday was 3 weeks post-op. So, life is slowly returning to normal around here. It's interesting - this has been something that we've been anticipating for her entire life, and although we aren't completely finished with this, we're working our way forward, and looking to the future of her life without this looming. It's kind of a strange feeling, actually.

I stumbled on a quote the other day that I love - it's been a little bit tough on occasion looking at the scars and incision marks on Kelley's head & tummy. (And leg from her canalplasty skin graft last summer) I can still picture her ear area before any cut was made. It's been bothering me a little bit, like I mentioned before, and then the other day I came across this quote that I want to share:

"See how the flesh grows back across a wound, with a great vehemence, more strong than the simple, untested surface before." ~Jane Hirshfield

Thanks for reading!