Sunday, November 27, 2005

Better pics, 31 days post-op

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

Image hosted by Photobucket.com

Image hosted by Photobucket.com

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

Image hosted by Photobucket.com

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?

Image hosted by Photobucket.com

Here's Jack after fingerpainting with his cranberry sauce:

Image hosted by Photobucket.com

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:

Image hosted by Photobucket.com

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:

Image hosted by Photobucket.com

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!

Image hosted by Photobucket.com

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:

Image hosted by Photobucket.com

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

Image hosted by Photobucket.com

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

Image hosted by Photobucket.com

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:

Image hosted by Photobucket.com

Image hosted by Photobucket.com

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.

Image hosted by Photobucket.com

Image hosted by Photobucket.com

Image hosted by Photobucket.com

Image hosted by Photobucket.com

Image hosted by Photobucket.com

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!

Image hosted by Photobucket.com

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:

Image hosted by Photobucket.com

Image hosted by Photobucket.com

Image hosted by Photobucket.com

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:

Image hosted by Photobucket.com

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

Image hosted by Photobucket.com

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:

Image hosted by Photobucket.com

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

Image hosted by Photobucket.com

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

Image hosted by Photobucket.com

Jack RUNNING at the zoo:

Image hosted by Photobucket.com

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

Image hosted by Photobucket.com

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

Image hosted by Photobucket.com

Miles and Grandpa in the Disney car:

Image hosted by Photobucket.com

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:

Image hosted by Photobucket.com

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:

Image hosted by Photobucket.com

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:

Image hosted by Photobucket.com

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:

Image hosted by Photobucket.com

Miles in the Tea Cups with Little Quack:

Image hosted by Photobucket.com

Miles and me on the rocket ride:

Image hosted by Photobucket.com

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.

Image hosted by Photobucket.com

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!

Friday, November 04, 2005

First Post-Op

Hello, everyone! We’re back in LA at the Magic Castle hotel. They have been very nice here and I would heartily recommend them to anyone—especially those of you that are coming out here to see Dr. Reinisch. Ask for the ear surgery discount. This time they didn’t have rooms for us for all the nights we wanted, so they gave us 2 rooms for the price of one in their hotel higher up in the hills, just above the MC, called the Hollywood Hills Hotel. So we have 2 one bedroom suites for the price of one surgical discounted price. The rooms aren’t quite as nice, but we have more space, which is great.

Yesterday we went to our first official post op with Dr. R. Warning: I’m going to post some pretty graphic pics in a minute. They removed all the dressings, removed the drains (by far the worst part), cleaned up his ears, and washed his hair. They then put new dressings and cup on the right ear, but he doesn’t have to wear a cup on his left ear anymore. Now he’s a lop-sided teletubby!

Cleaning up helped the itching head somewhat, but now the skin graft on his left ear is itchy. We had an even harder time last night keeping the “hat” on, because he keeps scratching and since the sides are uneven, it doesn’t stay on very well. Thankfully, he was absolutely exhausted last night, so slept pretty well, despite everything.

Unfortunately, it looks like we won’t be able to go home early and will have to stay until Friday. Dr. R. now wants to see us on Tuesday, but doesn’t know when. We’re just supposed to call him on Tues. morning to find out when to go in. We wanted to leave early, but it is just too cost prohibitive to change. So I guess we’ll be staying in LA for awhile. Hopefully we can work out a deal with the Magic Castle so we can stay here the whole time. And hopefully we can find some fun, but inexpensive things to do. The original plan was to go back to Mesa in between the 1st and 2nd post-op appointments, but now that things have moved around, there just isn’t time.

Okay, here are some pics. Here he is with the netting off and they’re starting to remove the cups with some anti-adhesive:

Image hosted by Photobucket.com

Here is the new ear with the cup removed, but the molding still over it. You can see the drains.

Image hosted by Photobucket.com

Here is the left ear that had the skin graft with the packing on it:

Image hosted by Photobucket.com

Okay, this one is kind of gross. This is the new ear with the molding off. Yes, it looks awful, but I had been pre-warned, and it actually looks better than I expected. Also, while we were waiting for this appointment, we met a nice family from Florida. They were there to have the 2nd surgery tomorrow. His ear looked fabulous and it wasn’t even “done!” So I know this one is going to look great too, once the swelling goes down, is cleaned up more, stitches are gone, etc.

Image hosted by Photobucket.com

Here is what the ear with the skin graft looks like. They removed the stitches after this pic was taken.

Image hosted by Photobucket.com

Having the drains removed was really scary and I’m sure very uncomfortable, if not painful. I couldn’t believe how long they were! Miles totally freaked out and the rest of the appointment was fairly traumatic--poor guy. They washed his hair, then put a new molding and cup on the right ear. Then netting over his head.

I just looked and I can’t believe we don’t have a decent pic yet, with his new “half a teletubby” look, but we’ll get one. Here’s one with his hat on, so it’s hard to tell. It’s Miles and Jack at the beach at Santa Monica Pier.

Image hosted by Photobucket.com

We had the most relaxing day yet, which was WONDERFUL. We took our time getting ready, then went to Santa Monica Pier and then Venice Beach. Tomorrow we plan to go to Disneyland. Hopefully it won’t be too much for Miles (and the rest of us!). Miles did really well today. He didn’t mess with his head “gear” too much and he seemed a little less tired.

Mom and dad go home on Sunday. My sister is due to have a baby any day now. Hopefully she can wait until mom gets home and even better until we get home. We are really thinking about you, Krista, and send you our love.

Wednesday, November 02, 2005

Arizona Update

Hey,everyone! So sorry that it has been so long since we've updated this blog. We have not had internet access since we left LA. We are at my parent's place in Mesa--much cheaper than staying in LA. It took about 7 hours to get here.

Miles is doing pretty well, all in all. He's very uncomfortable and itchy in his "hat." Nights especially have been difficult since he scratches, rubs, and rolls around in his sleep. One of us has to stay up with him to make sure he doesn't lay on an ear or rub his bandages/cups off. We're all very tired! One night we were feeling pretty cocky and thought that we'd just have daddy sleep with him, since it had been going pretty well. That turned out to be the worst night of all, poor boys. So now we're back on the shift regimen.

We were able to remove the marcaine drip from his abdomen skin graft with no trouble at all. It popped right out, even before I got to the room to help. We did it while he was asleep and it didn't disturb him at all. His abdomen has not really seemed to bother him much, so that thing must really work.

Miles' right eye swelled up a couple days after the surgery. Thankfully, Dr. R. had warned us that it would probably happen. He looked like someone socked him in the eye. It's starting to get better now.

Tomorrow we head back to LA for our first post-op appointment. Dr. R. will remove the drains; change the cups, dressings, and head netting; and hopefully wash his hair. We're hoping Miles will cooperate. The last appointment was such a disaster. We're going to take Grandma with us, since she sometimes has a calming effect on him.

At the surgery, Dr. R. told us that our second post-op will probably be Monday the 7th, rather than the 10th like we had expected, because he's going out of town. A little frustrating since our plane tickets to leave are on the 11th. We won't know for sure until the appointment tomorrow (I guess he could have us see a different doc; he didn't want us to make an appointment for the 7th yet). So everything is kind of up in the air. We would REALLY like to go home before the 11th if we can. American Airlines are being jerks and will charge us $150 per ticket to change, but we might do it anyway. With hotels, car rental, etc., it might be worth it in the end.

We've done a few fun things since we got to AZ. All of our trips have to be fairly short, since Miles tires easily, but it's amazing how much energy he sometimes has. He has run so much that the liquid in his drains got frothy! Ewwwww... We went to the Phoenix Zoo, IKEA (wow--wish I had one in Colorado), and had dinner one night at a goofy restaurant called the Organ Stop. The whole room is a giant organ, and you eat pizza and watch a big organ show. The kids were in awe.

Here is a pic of Miles with his swollen eye. Not the greatest pic, but we'll try to post more later.

Image hosted by Photobucket.com

Here is one from this morning, you can see that the eye went down and is just looking a little yellowish.

Image hosted by Photobucket.com

We'll try to post more when we get back to LA and have a better internet connection.

Thanks for keeping us in your thoughts and prayers!