Thursday, December 29, 2005

60 Days post-op

I promise to do a true update soon. You know how it is with the holidays...I haven't had time to post! Anyway here's a pic of Miles from the other day at 60 days post-op. I can't believe how amazing the ear looks and I'm already having trouble imagining him without the new ear! I'll never forget that beautiful little ear, but it's hard to imagine him now without the big ear.

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Monday, December 12, 2005

Early Christmas

First, let me say that we're going to start focusing this blog on both boys. Miles' ear is doing great, and we'll continue to post pics of his ear as it continues to heal. But we'll start using this more to update friends and family on both of they "guys."

Grandma and Grandpa C are here from Ohio for a few days so we had an early Christmas on Sunday, followed by a big party for the whole family in the area that evening. I'm exhausted now, but it was fun!

Here are the boys decorating the tree. Note the set of socks Daddy put on Jack (what's up with that?)and note that Jack is actually removing ornaments instead of putting them on the tree:

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The whole family in front of the tree:

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Opening stockings:

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Miles winking:

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The big gift from Grandma & Grandpa:

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Miles' face when he first got on the new gift:

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So for those of you that check this for ear updates. Miles continues to be very sensitive about us touching his ear, but is slowly getting over it. It's still a little "scabby" and probably a little swollen, but not much. As you can see from the pics above, it's really looking amazing. We'll get another close up soon.

Happy Holidays!

Thursday, December 08, 2005

Pink

We had to post this pic, because it has Miles' ear and the infamous "Cinderella" cup. Okay, it's really a Sleeping Beauty cup, but Miles calls it his "Cinderella Cup." It started Miles' pink obsession.

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The day after surgery, we walked down to the Hollywood Walk of Fame. Miles was being kind of whiney and we were feeling really sorry for him, so we did something we don't normally do. We took Miles into one of the cheesy souvenir shops and told him he could have anything he wanted. He went straight for this cup. Brian tried EVERYTHING he could to get him to pick something else out, but no, it had to be the pink princess sippy cup. So what could we do?

This began an obsession with pink, girly things. The other day we were at a hobby shop and told the boys they could each pick out a rubber stamp thing. Guess what Miles chose? The pink and purple hand mirror. You should have heard Brian trying to talk him into a train or giraffe one. Well, guess which one we walked out with?

Then later in the week, Miles needed new shoes. Brian took him shopping and Miles went straight for the pink glitter sneakers. Daddy put his foot down this time and Miles walked out with some nice, manly brown suede shoes.

Sunday, December 04, 2005

37 Days Post-Op

Oh my god! Does this not look beautiful! From the front view, you almost can't tell he has microtia. Dr. R. is a genius.

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Here is what the ear is looking like today. He let us clean a lot more dry skin, scabs, and stitches off it in the bath--with a LOT of blood, sweat, and tears (well, the latter two anyway). He still can't stand for us to touch either ear, but he has been hat free for a week now. YAY!

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Here's the other ear (the skin graft donor ear):

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And here are both boys helping decorate cookies this evening. Miles insisted on using not only red and green sprinkles, but also Halloween sprinkles and rubber ducky/bubble bath sprinkles (left over from his first birthday party). The cookies are gaudy to say the least. But we had fun and they are yummy!

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Sunday, November 27, 2005

Better pics, 31 days post-op

These pics are less blurry than the ones I took last night:

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This is the back of the one that had the skin graft:

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Today he is without a cup and net! He won't take the green floppy hat off though, and he won't look at the ear in the mirror. Hopefully he can get used to it soon, and be as excited about it as we are.

Saturday, November 26, 2005

30 days post-op

We had a decent Thanksgiving. It wasn't as good as it could be because my mom came down with the stomach flu that all the rest of us had had a few days before. So my sister, her husband and new baby didn't come over, making it a pretty small party at the table. But the food was good (I did it--woohoo! Brian did the turkey), and we sure do have a lot to be thankful for this year.

Here is Miles at the Thanksgiving feast table. Do ya think I made enough stuffing?

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Here's Jack after fingerpainting with his cranberry sauce:

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Today we started the "weaning" process. That is, the weaning him off the net hat first. We finally convinced him to wear this green hat instead. Here he is eating grapes:

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Then at bathtime tonight, we got the cup off with some drama, but not as bad as before. BABY OIL IS MUCH BETTER THAN FINGER NAIL POLISH REMOVER! Thanks to Jean for that tip. He actually really let me clean up the ears (I found that letting him clean my ear first helped). I'm having a hard time getting a non-blurry close up of his ear, so we'll try to get a better one in the next few days and post again:

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We put a cup on for bed without any adhesive (thank god!), using the strap instead. And his green hat (which I plan on removing after he goes to sleep). He was finally all happy about things. Yay!

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Wednesday, November 23, 2005

Happy Thanksgiving!

Happy Thanksgiving, everyone! Miles is doing great and we're excited about hosting Thanksgiving at our house tomorrow. He still has his cup on and we plan on this one being the last one. We're kind of just waiting for it to loosen up, so we don't have to go through what we did last time to remove it. The adhesive on those things is ridiculous!

Yesterday his preschool hosted a Thanksgiving "feast" for the families. The kids made "stone soup" and cornbread, and also served fruit, veggies and dip, pumpkin pie, and apple cider. They did a little "show" before hand, where they sang some songs about turkeys and Thanksgiving. Here are some pics. Miles was the kid on the sideline who only participated occasionally and pulled a lot of goofy faces. Unfortunately, the latter pics turned out blurry, but they would have been priceless.

Here he is in the program:

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And here at the table with the pinecone turkey he made:

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Afterwards, he got to show his brother Jack some of the work he does at school:

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Tonight after his bath, we didn't put the net back on. We're trying to "wean" him off the net, and will eventually do so with the cup. He is sure that he has to have both ears covered at all times, and we're trying to convince that he doesn't have to anymore. We were able to get him to handle it tonight by having him help make an apple pie with Grandma. Baking is one of his absolute favorite things:

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Have a great Thanksgiving! Get stuffed!

Friday, November 18, 2005

Pics of ear 20 days post-op

Below are some pictures of Miles' ear without the cup. It is very swollen, but actually looks better than I had expected. I think I had really prepared myself for the absolute worst.

Last night was quite an ordeal. That cup was really stuck to his head, but we really needed to clean that ear. It had been way too long. The nurse said, "Oh, it's easy: just use a q-tip and finger nail polish remover (acetone)." Ummmm....I definitely would not say it was easy. He kicked and screamed and just totally freaked out. One of us had to hold him down, while the other worked with the q-tip to loosen the adhesive. And no wonder he was so upset, it still removed a lot of his hair. Poor little guy. It was truly traumatic for all of us. I really don't like to hurt my little boy, and it just really broke my heart.

For the new cup, we only took half of the strip off of the tape, so most of the part of the cup on his hair does not have any adhesive. Hopefully the next removal will be a little easier. Also, someone on the microtia board recommended trying baby oil, so I'm going to try that next time. I'm already dreading it!

After we got the cup off, he was very sensitive about having his ear exposed. He insisted that it be covered at all times. We finally convinced him to let us clean it up a bit and wash his hair. I didn't do as good of a job as I would have liked to, but it's definitely better than it was.

So here are the pics. It's a little graphic again. I emailed them to Dr. R. and am hoping he responds saying that the ear looks like it should at this point.

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Tuesday, November 15, 2005

2nd Sugery Scheduled!

We are scheduled for the second stage surgery on June 16. It sounds like it will be a piece of cake compared to this one. We only have to be there 3-5 days after and NO CUPS! I'm almost looking forward to this one!

Monday, November 14, 2005

Cousin!

Miles and Jack are finally cousins! Beautiful Caelan Elizabeth was born to my sister early this morning at 2:49 am, weithing 6 lbs., 10.2 oz and 19.5 inches long, after about 10 hours of labor. Mommy, Krista, and Daddy, Eric are doing well and are proud parents. Here is a picture of the gorgeous little girl. I am so excited to finally be an auntie!

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Friday, November 11, 2005

School and bath

Today Miles made a short visit to his preschool. He'll start back "for real" on Monday. The kids and teacher were so sweet. They were waiting at the door for him and had made a "Welcome Back, Miles" sign. He did a little new "work:" grinding some corn. He showed the other kids his new ear and Little Quack. Here are some pictures:

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Tonight we washed his hair and cleaned up the left ear that had the skin graft. We wanted to do the right ear too, but the adhesive on the cup is still pretty strong, and it pulled his hair too much to take it off. So it looks like we'll have to wait until the adhesive loosens more on its own. There's not much hair under there, thank goodness.

Here is a pic of the right ear with the cup:

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And here is the left ear. Note how the adhesive on the cup removed his hair. Poor guy!

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Thursday, November 10, 2005

Ahhhhh....home

Yay! We're home! Blessed, blessed home. The kids were great on the plane flight home. We even had a guy comment to us how wonderful they were (gotta love that!). The boys are currently running around like crazy, screaming at the top of their lungs, so I guess Miles is feeling pretty good (Jack too!). I think they're glad to be back too.

I wrote AA a nice email thanking them for making an exception to their policy. We got back pretty late and the boys were soooo tired. Mommy and Daddy too!

We're going to take it easy for the next couple of days. Miles is going to make a short visit to his preschool class tomorrow and then will go back to normal schedule on Monday. I'll go back to work too. :-(

Last night, poor Brian slept on the floor of Miles' room because we were worried about him rolling on his ear cup. We called Dr. R's office today and they said no need (I had a feeling we were being over-cautious, anxious parents). They said that if he rolls over on it, he probably won't stay long, because it won't be uncomfortable.

We're also going to give Miles the big bath tomorrow night and wash his hair and try to clean the ear up a bit. He's had baths, but he hasn't had his hair washed since nurse Pam did it at the first post-op. Yuck! Today when I asked they said it's okay. Hopefully he won't freak out!

Have a great day. I'm gonna go sit on my couch and veg. YES!

Wednesday, November 09, 2005

American Airlines Rules!

Just got a call and they're letting us fly out tonight no charge. Thank you, AA!

We'll write more tomorrow--from home!

From Miles

Miles would like to make a post on his blog:

mmmmmmmmmmmmmmmmmmillllllllllllllllllllleeeeeeeeeeeeeeeeessssssssssssssssssss

zzzzzzzzzzzzzzzzzzzzzssssssssssssssssssssxxxxxxxxxxxxxxxxfffffffffffffffffsss
ssssssssssssqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqq
qqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqzzzzzzzzzzzzzzz
zzxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

Tuesday, November 08, 2005

Random pics from this trip

Edited to enlarge some pics and add one:

Boy, we are blogger happy today. We're just so happy to have an internet connection again. We went through the pics from the trip tonight and wanted to share this random assortment:

With Elmo at the Hollywood Walk of Fame:

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Little buds walking into the Phoenix Zoo. It jest don't git much cuter than that:

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Jack saying "Noooooo!" at getting in the rental stroller at the Phoenix Zoo. Bad quality pic, but the face is priceless:

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Jack RUNNING at the zoo:

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Another priceless face of Jack at the Organ Stop restaurant in Phoenix:

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Miles with his beautiful grin at the waterfall behind our Hollywood Hills hotel:

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Miles and Grandpa in the Disney car:

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And what just may be the best picture of all time: Jack when Brian took him out of the hotel one early, early morning, so he didn't wake the rest of us up. Gotta love the outfit: jammies and a cowboy jacket, and in front of the Hollywood sign to boot:

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2nd post-op

We had our 2nd post-op with Dr. R. today. He changed the cup and netting over his head. He also removed the blue molding that was on the new ear and cleaned everything up a little bit. We had teething Jack with us who was screaming, so unfortunately we only got one pic that turned out. This is the new ear. Miles is crying because removing the cup pulled the hair under it. Other than that, he was actually pretty good at this appointment. Warning: a kind of gory pic:

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Prior to the appointment we didn't do much. We had lunch at a place called "Wacky Waffles." We figured that would have to be cheap--ha! I had a $9 omelet. It was a really GOOD omelet, but sheesh. I think it was so expensive because it's across the street from the Chateau Marmont, which we didn't realize at the time. We even saw some "celebrities" there: Rachel and Veronica from "Road Rules." LOL!

Also on the way back from the doctor appointment, I SWEAR I saw Martha Stewart outside an antique store in Beverly Hills. I could be wrong, because I would expect her to have an "entourage" and she didn't, but it sure looked like her. Plus it was the kind of place you might expect to see her.

Right now Jack is hopefully taking a nap and Miles and Brian are taking a walk outside to look at the blimp. The Stones are doing another show tonight, so it's back.

Since I posted a sad pic of Miles above, here's a happier one in those gardens behind the hotel the other night. They're busy, so not smiling, but they were having fun:

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American Airlines Sucks!

Avoid them at all costs. They have no compassion what so ever. We have talked to numerous people, including supervisors, but they insist that they will charge us $156 per ticket to go home tomorrow. So we're still stuck in LA until Friday. We just wanna go home!

Tips for ear surgery

I posted this on the microtia yahoo board, but thought it was worth posting here.

Here is some advice--some of which I received from people on that board and worked for us--some of which we just discovered on our own:

1) Bring lots of shirts and jammies that button down and don't have to be pulled over the head.

2) Bring pants/shorts/skirts that have a waist band (not button or zip) so they're easier on the abdomen skin graft.

3) If you have a boy, get a really short buzz cut before the surgery. They'll be shaving the one side of the head anyway. They're going to have to go without many hair washes for awhile, so the less hair, the better. Also, the cups they have to wear afterwards have adhesive that can pull out the hair when removed. So again, the less hair, the better.

4) Bring bendy straws for drinking immediately after the surgery. Popsicles are good for sore throats after the intubation during surgery.

5) Bring lots of little cheap but "wonderful" gifts and treats for "bribes" when needed. I know, they say it's awful to bribe your kid, but sometimes you just gotta do it. For us it was Bob the Builder die cast figures, lollipops, and M&M's.

6) Baby wipes for washing or cleaning them up, especially around the drains on the neck.

7) A small stroller, like the cheap umbrella kind. They will probably tire easily and it is painful for them to be carried on your hip due to the skin graft area on the stomach.

8) DVDs and dvd player. This is a good activity to keep them occupied, yet still rest. Some hotels, like the Magic Castle have DVD players in the room. However, we found the DVD player to be useful while on the plane, in the car, and in Dr. R.'s waiting room (he does have VHS or DVD players in the patient rooms, but we found it useful to have Miles' favorites with us).

9) A potty seat, since they can be a bit weak and wobbly after the surgery, and have trouble sitting on the toilet.

10) If you have other kids try to have someone else like a grandparent come with you to help out and keep them out of your hair. They can also help with the sleeping rotation. We've had to take turns sleeping with Miles. At first, we actually had to stay up with him because he was so bad about rolling over and messing with his "head gear." Now we can just sleep with him and wake up when needed. But at first we got no sleep. I haven't felt like that since I had a newborn.

11) Take something with you to the surgery that will really distract you. For us it was a book of Soduku (sp?) puzzles that a friend sent. I'd never done them before, but they were a life saver. You have to concentrate to do the logic puzzles, so I could keep my mind occupied. Whenever I stopped doing them, I was pretty much in tears.

12) Be prepared for a possible really bad scenario when your child first comes out of the anaesthesia. Dr. R. told us that he might be "restless." What an understatement! It was awful and I wasn't prepared for it. The dr. assures me that they aren't really awake and won't remember it, but it's hard to watch.

13) Don't make any promises to a ton of people that you'll be calling them after the surgery. Have one point of contact. In our case it was the blog. Or you could call one person who could then call everyone for you.

14) If possible, get the prescriptions filled while your child is in surgery, so that you don't have to worry about it afterwards. Dr. R. will give you the Rx before the surgery and there is a drugstore near by the Surgical Center (not sure about CHLA, but I would suspect there is one there).

I'll post more later, if I think of any. I'll try to post again today after our appointment with Dr. R.

Monday, November 07, 2005

Killing Time in LA

Yay! Finally a decent internet connection. The hotel's was not working properly for the last 3 days. I went through total withdrawal! Since I last wrote, we went to Disneyland on Saturday. What fun. We only did a fraction of what we wanted to do, but it was a blast. And boy were the boys tired at the end of the day (the rest of us too!). Here are some pics:

The boys with Donald Duck:

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Miles in the Tea Cups with Little Quack:

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Miles and me on the rocket ride:

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Yesterday, my mom and dad went home, which was a bummer. We miss them. We took it easy. Decided to find a transportation museum with a train the kids can ride in the afternoon. It took us forever to find it and when we did, it had just closed 15 minutes earlier! Argh.

Here is a pic of Miles in front of a blimp outside our hotel yesterday. We think the blimp had something to do with the Rolling Stones concert in town, but we're not sure.

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Today we had lunch at the Farmer's Market and saw our first star! John Malkovich. Brian thinks he may have seen Vince Vaughn in the hills above our hotel, but he wasn't sure. We drove down Rodeo Drive (yawn) and then found a park with a playground for the boys to blow off some steam. I think Jack might be getting a molar. He's drooling like crazy and driving US crazy. Tantrum city.

We moved back down to the main Magic Castle hotel today. The room is a little bigger and nicer and we don't need the 2 rooms that we did when my parents were here. Yesterday we did some exploring behind our Hollywood Hills hotel. There were a bunch of Japanese gardens, waterfalls, and amazing views of the city. So cool! None of our pics turned out great because the smog was so bad. That's LA for you. But here is the website of the restaurant there that shows the views. The gardens we were in were right below the restaurant (I believe they belong to the restaurant, which I also think is owned by the Magic Castle): Yamashiro

Tomorrow the 2nd post op with Dr. R. Can't wait to get his stuff changed. I had a terrible night with Miles last night. He slept fine, but kept pulling off his net and I constantly woke up and had to fix it. Tonight Brian gets to sleep with him--I need some shut eye!

After our appointment tomorrow, we'll continue to kill time in LA until our flight on Friday. Thanks for keeping us in your thoughts and prayers. We love you!