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!

Spoke a little too soon...

On the whole "life returning to normal" thing. Remember the fluid I mentioned in the previous post? It's BAAACK. We noticed on Monday that the fluid seemed to be collecting in one spot on her upper incision on her scalp - not near the ear. There seemed to be more, as well, so we called for Dr. Reinisch. Bless the man - he took a call on his cell phone from a ski slope. He recommended we have it drained.

Thus began my Tuesday. I had a little trouble getting through to our pediatrician due to a LARGE miscommunication with me, him, and an advice nurse. I was looking for a recommendation on who should do the drain, and suffice it to say that didn't quite happen. We turned to Papa Gene. So, after waiting for a few hours to talk to someone at the peds office, only to be told they couldn't help me - we trekked it on down to the OHSU School of Dentistry where my Dad and one of his colleagues took care of things.

Once again, my daughter was a trooper. Dad and Dr. Ewick numbed the area with some topical cream, gave her a shot of local, and then drew out 15 cc's of old blood from her head (that's the equivalent of about 3 teaspoons.) Apparently it was a "liquified hematoma." Not urgent, but not exactly a good thing, either. Kelley didn't cry until it was over. She just kept asking about the defibrillator in the office. She was massively curious about how it worked and why.

Unfortunately, the pressure bandage my Dad put on came off during the night last night, and we noticed today that it seemed to be filling back up again. Dr. Reinisch's surgical partner, Dr. Lewin, told us not to get too worried about it, but to keep an eye on it and we may need to drain it again. We're going back to OHSU tomorrow so my Dad can look at it again and decide whether or not it needs another drain.

I haven't had a chance to e-mail Dr. Reinisch about all this, but I'll be very interested in his response. In the meantime, I did actually get to speak with Kelley's pediatrician, who apologized for the miscommunication and did give me a name or two of surgeons who could help. In retrospect, I should have contacted Kelley's otologist (ear doc) to begin with. Oh well. Live and learn.

I decided to spare you all gory pictures of a lumpy liquified hematoma today. Instead you get a happy picture of my three favorite people.

More updates soon.

An impromptu hair washing this morning

Kelley's bandage was once again not working very well, so we decided since it needed replacing anyway we'd wash her hair. We got an opportunity to see her ear again. It's remarkable how much the swelling has gone down. John and I were really glad to see how good it's starting to look.

We did have a question this morning, however, that facilitated a call to Dr. Reinisch. While John was washing her hair, he noticed some fluid build up in her skull - up high where she is shaved. It's a little scary because you can tell it's a decent sized fluid build up, but thankfully he said that it wasn't anything to be concerned about and that her body will just resorb it. I'm very thankful that we don't have to take her in for any drainage catheters and such.

So, we've fashioned a new way for Kelley to wear the bandage - John made it similar to a headband, and he used the spirit gum adhesive to secure the bandage to the ear cup. Now we've relieved the itching problem, the massively tangled hair problem, and it's staying in place pretty well. It's certainly a relief for her. Plus, it's made it so that the looky-loos (people staring) have much less to stare at.

Life is returning to normal around here. Hooray!

Hair washing and bandage change

I'll be really glad when the head sock thing can come off. One tip - if you have to wear a bandage like this, invest in some spirit gum. It's a skin-friendly adhesive that you can buy from a costume store - it's what they use in plays and such to put on fake mustaches and whatnot. Not perfect, but it does help.

Kelley got a bath and a hairwashing last night. I'm pretty sure she had the dirtiest feet on the face of the earth. It went fairly well, but her hair was that knotted up mess again from the head bandage. John washed her hair in the sink and combed it out with the conditioner in it - that went better, actually. So, she's all clean, and the ear is starting to look better. The swelling has gone down a little, which was a big relief to us. It's nice to see that it's healing.

Kelley woke up in the middle of the night last night and got in bed with us - all four of us in the bed....and we swore that would never happen. Oh well. Sometime in the night, her head bandage came off, but her ear cup stayed on. It was a relief to see that her hair naturally falls in such a way that the part that was shaved will not show really while it's growing in.

That's all we have to report at the moment. The last picture is a sample of what our poor son Ryan gets to put up with. The pink things on his head are Kelley's Princess iPod (pretend) headphones. Her goofy sensibility is still in tact.

Cheers!

Pics - as promised.

Here's the pics that I mentioned yesterday. You can see that her stitches on her tummy are healing nicely, although it is kind of tough to see huge a huge long scar. I know with time it will fade, though. And they're doing such great stuff with scar revision these days if she ever comes to me and tells me that it bothers her, we'll look into it. (Joey...... :)

So, the first pic is right before we left the hotel and started heading home. Ryan was such a trooper through this whole thing - he just went with the flow. We discovered on this trip that he loves trucks. On the way home from San Diego, he was very fussy in the car - except when he could see a truck (commercial-type) on the freeway. It was pretty funny. "Aaah" stop. "AAAAHHHH" stop. "AAAAAHHHH!" Stop.

Not much else to report. Spring break is tough to keep Kelley occupied, but she's having fun with her TV and computer games, and if there's ever a time when you can indulge your kid with TV and computers, it's post surgery, huh?

For your reading pleasure - here is a link about the type of implant that Kelley received - her "new" ear is made of a medical-grade plastic called MedPor. (Eric Peterson, this one's for you.) http://www.porexsurgical.com/english/surgical/sprodauri.asp You can see by the picture that the product is shaped like the cartilage of your ear.

Cheers everyone.

One week post op today! And we're home!

Ok, we are one week post-op. Kelley's steri-strips on her tummy came off yesterday, and she hasn't had any trouble with them so far. She was quite curious last night about the stitches on her tummy, though. She wanted to know all about that yesterday - "What are stitches?" "How do they put them on me?" "Will they always be there?" Kind of hard to explain to a 4 year old, but she seemed to understand.

The doctor warned us that she would get swollen on her right cheek and under her eye, and sure enough, she did. It took a little longer than we thought it would, but it doesn't seem to be slowing her down. She looks a little like she has a healing black eye. We will be changing out her bandage again on Thursday, so I should be able to get pictures of her post-op ear then.

The flight home Sunday was uneventful, and we are home. The lines at LAX were unreal, but we got there in plenty of time. Several people that were in the line with us missed their flights because from curb to gate was over an hour. It was CRAZY.

A special thanks goes out to Kevin Corcoran for driving us to and home from the airport, and to Kristin and Julie. I cannot tell you how awesome it was to come home to a clean, picked up house. I'm utterly and totally embarrassed at how messy it was, but you both know me well enough to know that my house never really gets "clean."

And what a strange place Los Angeles is. Everything is "tagged" with gang graffiti. I thought this was a wierd place for 'tagging,' - a grocery store bathroom toilet seat. So, people are putting their butts down on the name of your gang and doing their business. Oh the irony.

We drove through Beverly Hills - the richie rich parts, or as my Dad refers to them - "Got Rocks Acres." We drove by a home that had about 2 million dollars worth of Ferrari's parked in front of it. I got a picture. Who lives like that? Dang! And...my last celebrity sighting - we're standing curbside at LAX, and I'm giving Kelley some pretty stern safety instructions - you know the kind - "Stay close, make sure you can always touch one of us, etc." I looked up and immediately to my right was Diana Ross, and her 'people.'

Anyway - it's good to home in a place where I can drink water out of a drinking fountain and not gag. Yay Portland. I'll be posting current pics as soon as I can.

big warning - yucky pics ahead.....

Ain't gonna lie. Today was not easy. We went to Children's Hospital LA to haver Kelley's bandages changed out and her suction catheters removed. Removing the catheters was painful for her, but honestly washing and combing her hair was worse.

First of all we got to the clinic and waited for more than an hour. Kelley didn't mind, because it was a cool kids waiting room, but still! Anyway - they called us back, removed her head sock, and you can see by the medusa picture that her hair was a total disaster.

Dr. Reinisch removed the suction catheters and it scared her and it hurt, so she cried a little. They had a TV in the exam room and she was soon distracted by The Fox and the Hound.

Nurse Pam washed her hair, and when John started combing it out she got really scared. I mean real, deep, fear. She kept begging him not to comb the hair on the side of the surgery. Nurse Pam brought her a Fairytopia Barbie, and she was happy about it, but still really freaked. Her hair was a matted mess, and was still super tangled after washing and conditioning, so it was a tough stretch.

We succeeded (Rather, John succeeded. What a man.) and she got a new head sock, much to everyone's dismay. It's a pain in the butt. She has to wear it with the ear cup for 2 more weeks at least, and it makes her itch so bad we're in for a long stretch I'm afraid. We are going to have to change it ourselves next week. Bummer.

So, the picture you see of her ear is pretty gruesome, I know. Right now, it is very swollen and is standing away from her head quite a bit. The swelling will subside over the next few weeks, and as it heals will start to pull closer to her head. They did have to cut a large section of her hair, and that was in order to access a piece of the anatomy called the fascia. It's what gave her new ear it's blood supply. The site on her tummy was to give her skin behind her ear - they wanted to try to match the color on the outside of the ear from the skin behind it, and needed to replace that skin with skin from her tummy.

We let her choose where she wanted to go for lunch, and she chose "Grape House" aka Olive Garden.

We had a but of a scare this evening as when we got back to the hotel she started getting a fever. We gave her an extra dose of antibiotic and some Tylenol and the fever broke. Phew!

We are headed home tomorrow and should be back at the house in the early evening. Thank you all so much reading and for your support. It means so much to us.

Warning about the pics - might be a little yucky....

Sorry for no word yesterday - a few members of the family like the computer. (John. Kelley. Talking to you both.)

Anyway - yesterday we ended up laying low again. As you can see by the pictures, the marcaine pump removal kind of sucked. Kelley was scared (I sure would be) but we tried to play it down. Papa Gene first pulled off the sitcky saran-wrap like stuff that was covering the pump site and her graft donor site. (Her poor little belly button was squished.) Then she started complaining that she had to go to the bathroom. Of course. The worst possible timing in the world. So, my dad - Papa Gene - got everything ready and then pulled the pump catheter out of her tummy. The tears came. Mine would have too. But, the good news is, she didn't cry for very long. We've had hair combing meltdown sessions that lasted longer.

Unfortunately, at this point, the itchies started. Where her head wrap is, the stretchy stuff covering her head in the pictures, are causing her horrible itchies. Her hair is coming out of it and is a total knot. Last night (Thursday) was pretty rough, because she was thrashing about and at one point woke up crying because her head itched so bad.

We got up early this morning and took a road trip to the San Diego Zoo. Awesome zoo. I am in the process of uploading the pictures - along with the Disneyland pics - to a picture site. I'll post the link as soon as I decide where. Kelley did really well today. Her choice of fashion wasn't exactly what I would have chosen (A button-down boys shirt and her Sleeping Beauty nightgown. Yes, nightgown. ) That, coupled with her post-op bandages and the pink safari hat we bought her - lots of looks. Oh well. Screw em. My kid's happy, she thinks she looked fabulous, and she had a good time.

That's an interesting thing, actually - having your child be the object of looks and the "I'm looking but I'm trying really hard not to look but I just can't help it" thought process - mostly by adults. I really appreciated one mom at the zoo today who asked. She said "Did she have brain surgery?" I was given the opportunity to briefly explain why she had a head bandage on. I was grateful. I'd rather explain than try to ignore the people openly staring at my daughter.

More thoughts on Beverly Hills - the Police drive Mercedes M-Class cruisers. Wha? We stopped in a children's store called Bellini. I could buy an outfit for Ryan (4 months old!) for $68.00. It was a t-shirt and pants. John and I got a grown-up dinner last night (thanks Grammy & Papa!) and noticed a woman with her children and the nanny getting in the car. The woman made the nanny sit in the back! Jeez!

Anyway - tomorrow Kelley is getting her dressings changed, and Dr. Reinisch is going to wash her hair. All of us are excited about that. I will post pics and an update tomorrow. We are heading home on Sunday and will be back at the house in the early evening.

Thanks for reading.

Update on day 2

Thought I'd show off a picture of our princess with a princess. We took that picture this weekend at Kelley's Princess Luncheon at Ariel's Grotto.

First off, thank you guys for all your nice comments. It's nice to know that you are reading.

Today we layed low. Kelley got tired around Noon, and took a lengthy nap this afternoon. She had some pain in the late afternoon - enough to really slow her down post-nap. She hung out and watched Scooby Doo, then a little bit of Mary Poppins. We gave her some medicine and now she's back to her old self.

Her head bandage is starting to itch, so I'm sure it's going to be an interesting few days trying to keep her from itching too much. Other than that, she's doing quite well.

Tomorrow will be possibly tough - we are removing her marcaine drip and bandages from her graft donor site. Thankfully my Dad - Papa Gene - will be here to help with that. Say a little prayer if you think of it. It looks like it might be a little scary for her. (and us!)

So, a few comments about where we are staying - Beverly Hills. What a wierd place. So completely removed from any sort of anything looking like reality. When John and I walked to the pharmacy to pick up Kelley's antibiotic, we witnessed a car accident between a new truck and an extremely expensive Mercedes. John thought the car was worth about $80,000. It was crunched up but good, too. It was surreal.

We see a lot of extremely expensive cars, extremely skinny people with fake tans, and a surprisingly diverse population. I expected Beverly Hills to be lily-white. It's not.

I've had my second celebrity sighting - my parents and I went to pick up some dinner at this fast-food-ish place called Koo Koo Roo - really good, by the way - and we walked by some kind of premier or party at a store on Beverly Drive. I saw an E! News van, lots of the above mentioned skinny people with lots of make-up on and fake tans, and when we walked by with our food, I walked by Ian Ziering from 90210. He smelled pretty good. :)

More to follow. Thanks for reading!

She's baaaaccckkkkk.....

We had an ok night last night. John snuggled with her in the sofa bed last night so that he could take care of her and make certain that she didn't roll over on to her surgery site. I took Ryan duty. She woke up at about 1 am crying in pain. We were nervous to give her any pain relief before she fell asleep earlier in the night because Tylenol with Codeine can exacerbate nausea, and we wanted to make sure that she got hydrated first. So, she woke up crying and scared because she was hurting, and the intubation from the surgery yesterday had irritated her throat so she couldn't breathe real well - her throat hurt. John and I got up, gave her a cracker and some water, and then gave her the pain meds. she fell asleep a little while later, and this morning....voila! She's back to her old self.

In fact, we're already having to try to keep her from running around all over the place. I've bribed her with dessert. Everytime she runs or jumps, she has to wait 10 more minutes for a treat. Not the healthiest, but hey - you do what you have to do, right?

So, we are laying low in the hotel today, doing laundry. Between the Spit Up King himself and Kelley's pukey episodes, we have a few things to wash around here.

I took a few pics of her today - some close ups of her suctions - called Jackson-Pratt suction catheters - and her skin graft site. This was apparently a muscle graft, which is fairly deep. It provided her surgery site with enough blood vessels to give the prosthesis a blood supply.

Thank you again for all your thoughts and prayers.