Well, we did go back for Ani’s followup at the beginning of the summer and we (the doctors and Ani’s parents) decided that she wasn’t yet ready for another go.  While the scar from her second surgery back in December had healed as well as could be expected, the skin around her cheek hasn’t yet stretched out enough to leave enough extra for another operation.

So, the plan now is to give Ani another 6 months for the skin to stretch and to plan on a followup visit with the team in Seattle around Christmas time.  If things look good at that point, we’ll probably be looking at the third (and, quite possibly, final) surgery at the beginning of 2010.

We’re all a little disappointed to have to wait, but this is definitely for the best.  Even though we’d hoped to have all the operations in the bag by the time she starts kindergarten (TOMORROW!) and Anikka herself wants the rest of the nevus gone, it’s better to wait for her skin to stretch out enough than to rush into things and risk severe deformation of her facial features.

We started with a very early morning, dragging the kids out of bed around 3am. The drive up to Seattle takes about 3 hours or so, and Ani had to be checked in at 6:45am. Thankfully, as early as that sounds, it actually worked out pretty well. The kids were able to rest during the drive, and Ani was less affected by the Thou Shalt Not Eat or Drink Anything After Midnight rule this time (was much harder for her to avoid food when the operation was scheduled in the afternoon).

She was in very good spirits when we arrived, too, all things considered. She danced around, looked at the fish, played with the toys… She wasn’t even upset by the hospital socks this time.

As always, the staff at the Seattle Children’s Hospital were outstanding. Every person you encounter at that place is kind, caring, and seems to know what they’re doing. Definitely makes it easier when The Time comes.

The actual operation took about the same amount of time as the first one. From the time the anesthesiologists walked her down the hall until the moment they paged us back to recovery to wait for her, about 60-90 minutes passed.

Couple things different this time around:

1. We didn’t get to wait in recovery during the procedure. This time, they sent us away and paged us when they were finishing up. Can’t say we liked it at first, but in the end I think it was better. Gave us a chance to recharge, and provided a bit of a distraction. Couldn’t help but feel a little guilty, though, drinking coffee in the cafeteria while she was under the doctors’ care.
2. There was considerably more facial featuring distortion, swelling, and bruising this time. This operation came a lot closer to the corner of her mouth, so the edge was pulled fairly dramatically. For several days after the operation, her mouth would remain slightly open in her relaxed state. She could still close it while eating, speaking, etc., but it was little disconcerting. It gets better every day, though, as do the swelling and bruising.
3. More pain. Last time, Ani only complained about pain for the first day or two, and then only infrequently. This time, she’s asked for the medicine much more often and for longer after the operation. A week later, it’s finally mostly subsided.

Heartbreaking moment of this trip: when we called grandma the next day to let her know how things went and Ani decided she didn’t want to be seen. Ani was more self-conscious about the swelling/scarring this time and didn’t want grandma to come over during the first couple days because she didn’t want her to see the wound. For the same reason, I won’t be posting post-op pictures this time around. Perhaps in a few weeks, if Ani’s OK with people seeing it after it’s had more time to heal, we’ll reconsider.

At this point, the vast majority of the nevus is gone. Judging by the amount they’ve removed in the first two operations, it seems likely that we’ll probably only need one more to remove the remaining portion of the nevus. We don’t yet know, however, if she’ll need any additional operations after that to help clean up the scar as much as possible.

Her post-op follow-up appointment is scheduled for a few days before Christmas, and if things go the same as last time, we’ll probably have another follow-up appointment around May or so to get the green light for Operation Number Three.

Anikka’s doing very well. There was a bit of stretching at first that concerned us a little bit, but that’s mostly gone away already and her facial features (eye, nose, mouth) have returned to their pre-surgery shape.

The stitches have all dissolved and, while the scar is still pretty obvious, it looks much better. Of course, since subsequent surgeries will remove that scar, we’re not too concerned about how it looks as long as there isn’t any infection, pain, etc.

Mentally/emotionally, she’s tough as nails. As I mentioned in the last post, the initial site of it when we got back from the hospital was a bit of a shock for her, but she grew used to the scar pretty quickly and doesn’t think much of it now. She would, at first, examine it in the mirror but it seemed like it was more out of curiosity than anything else.

We went to her followup appointment a couple weeks after the surgery and our doctor was satisfied with the progress. Our next step is to head back up for another checkup at around the six month point (late November), at which time we’ll all decide whether or not the skin has stretched enough for the next surgery.

Again, all in all, Ani is fantastic. She’s dealt with the whole thing like a champ, and doesn’t get upset even when she sees pictures from the day of the operation. She wasn’t at all uncomfortable during the followup appointment when we went back to the hospital, either, so we don’t expect her to be too upset when we go in for the next procedure.

And, frankly, the fact that she’s so tough makes it a hell of a lot easier for us, too.

She’s doing well. She’s much much tougher than I’ve ever been.

The surgery and recovery were longer than we expected, and they were a lot more aggressive during this first shot than we thought they’d be. We assumed they would try to remove about 25-30% of the nevus, but they ended up taking out about 70%.

(Warning: picture that includes the wound after the jump)

That’s great for the removal, but it meant a much longer wound than we thought. We were under the impression that they’d be working with a small area confined to the center of the birthmark, but she has stitches covering a crescent shaped wound starting near her eye, down to the corner of her mouth, then curving to the back of her jaw line. It’s a bit swollen around her eye and mouth, and all the skin is pulled pretty tight around that whole side of her face.

She’s in good spirits, though. Here she is just after waking up the morning after surgery (and with no pain killers in her system):

The only time she’s cried so far was when she saw the wound in the mirror, poor girl.

Otherwise, she’s pretty good. She’s drained and vomitted a bit in the car when we left the hospital, but she got her appetite back during the drive home and hasn’t thrown up again. She also has an incredibly high pain tolerance, so she’s only needed a couple doses of the pain meds.

Other than the wound, you’d hardly know that anything happened. She’s perky. And bossy. And wants to go out and ride the new Barbie bike we may have bought her the day before the operation… She has a hard time not touching the wound, so we have to reapply the antibiotic ointment pretty often.

We have to go up for a followup visit June 9, then schedule the next surgery for about 6 months down the road. The stitches are the dissolvable variety, so no need to go back in to have those removed. Otherwise, they just said she can decide when she feels well enough to go back to preschool, etc., and she can start bathing again any time.

Can’t stress enough how amazing Anikka is. She was nervous while we were at the hospital, waiting for her turn in the OR, but she handled it better than kids 2-3 times her age. You could hear others screaming and crying, while Ani stoically and patiently waited. Hell, we saw teenagers in tears that went through less than our Princess.

And the worst part about the whole thing to her? The stupid hospital socks.

One other thing… we have some renewed hope that we might actually get a hand from the insurance company when it comes time to pay the bills! The LA Children’s Hospital spoke to the insurance folks about everything and got a sort of qualified “yes.” Nothing’s guaranteed and we’ll still have to fight tooth and nail to see it happen, but there’s a chance that they might actually cover 60% of the costs. Unfortunately, they (the insurance company) won’t pre-approve anything, won’t put anything in writing, and left themselves a whole lot of wiggle room.
Hard part’s still going to be convincing them that this isn’t just for cosmetic purposes, something we know will be an uphill battle. Still, though, nice to know that there’s at least a chance that we won’t be completely out of luck.

Anyway, back to the fun… here’s Ani at the beach!

Mom, son work to change views of birthmarks

The article talks about a family whose son was born with a sizable port wine stain (a little larger than Ani’s congenital nevus) and who, in an effort to help change perceptions about them, wrote a children’s book on the subject. According to the sidebar on that site, a portion of the proceeds from sales of “Buddy Booby’s Birthmark” go to the Vascular Birthmarks Foundation (http://www.birthmark.org). (Shameless plug: if you purchase it through our link, Anikka also earns a commission toward her own surgery…)

The article discusses some of the very subjects we mention here, too. Things like the uncertain results you can expect from laser treatments, or the “what’s wrong with her face?” questions we’ve heard so many times from people old enough to know better. I hope their book sells well and makes a difference.

Also, in the side bar of that article, there’s an almost hidden link to a Q&A with Dr. Milton Waner that’s worth the time. Again, some of it hits pretty close to home and might sound very familiar to this site’s regular visitors:

CNN: Are some treatments done for cosmetic reasons?

Waner: This is not just a cosmetic issue. I think every child has the right to look normal. There are psychosocial implications. There are all sorts of implications that a child’s formative years are affected by the presence of a birthmark which will clearly distinguish that child from other children.

Doc shares birthmark basics – http://www.cnn.com/2007/HEALTH/conditions/04/02/hm.birthmark.qa/index.html

Let’s celebrate Ani’s birthday by helping her reach another milestone: the $3000 mark. Right now, when you take into account all the donations, Amazon sales revenue, and Google AdSense commissions, Ani’s already $2287.54 closer covering the costs of her surgery!

That’s just $712.46, or a little less than $90 per day, numbers we can easily reach. Of course, we appreciate any donations you feel like giving, but remember that there are many other ways you can help us reach that goal:

1. Spread the word! Tell people you know about Ani, congenital nevi, and this site. It’s as simple as clicking this link: http://www.anibella.net/2006/12/02/this-is-anikka/email/.

2. Link to this site! Link to us from your blog, your MySpace space page, or your website. You can also add the Anibella ChipIn graph to your site by clicking the Copy button on the graph in the upper-right.

3. Support the sponsors! We’ve earned about $107.44 so far through the Google AdSense links on this site. See something interesting? Click on it and take a look! Might find something you like and generate more revenue for Ani’s cause at the same time.

4. Buy, buy, buy! Take a look at Ani’s aStore, a list of various things that Ani loves and that we’re sure the toddler in your life would appreciate as well. Everything you buy through that page earns a commission for Ani. Don’t see what you’re looking for? Try searching for it through the Amazon search box on the right side of the page. She earns a kickback through any purchases you make there, too.

5. Buy, buy, buy some more! We’ve also set up an ebay store where we’re selling some of Anikka’s old baby and toddler clothes. The selection changes frequently as we find new things to add around the house, so make sure to check back often.

No matter how you choose to help, we appreciate it very much and would love to show that appreciation by listing your name and, when applicable, linking to your site on Ani’s Supporters page. Just send an email to anibella@anibella.net telling us how you’d like your name to appear and to which site you want us to link. We’ll have it listed ASAP!

Thanks again for all your help and support!

It looks like Ani’s not alone. Seems that the Grammy powers-that-be have some taste, too, as Dan Zanes and Friends won the Grammy for Best Musical Album for Children on Sunday! Congratulations, Dan, Father Goose, and everyone else who helped make one of Anikka’s favorite CDs!

Just wanted to let everyone know that Anikka’s Fund now has a presence on MySpace (http://www.myspace.com/anikkabellafund). Like Anikka herself, the MySpace page is barely past its infancy and has a lot of growing to do, but expect to see frequent updates there as it takes off. And Anikka already has her first friend there: Father Goose! If you have kids and don’t know Father Goose and Dan Zanes, you’re simply missing out We’re not talking about the Doodlebops or the Wiggles here, but rather good music that’s enjoyable for everyone in the family.

Of course, being filled with her favorite things, Anikka’s Amazon aStore (link at the top) contains tons of Dan Zanes stuff! And remember that if you buy it through this page, Anikka gets a commission.

We also wanted to take a moment to congratulate Drew Brees and the New Orleans Saints on their victory over the Eagles this weekend. Since we started this endeavor, several people have mentioned Drew Brees as an example of someone who has overcome the stigma associated with facial birthmarks and excelled in his chosen profession. In fact, many of the people who’ve found this site and read about Ani’s fund never would have found it if they hadn’t been looking for more information on Mr. Brees’s birthmark. We wish Drew and the Saints the best of luck in post-season and look forward to their inevitable Super Bowl victory!

And, finally, speaking of New Orleans… During that game this weekend, one of the announcers mentioned that the city, while in better shape than a year ago, is still far from its pre-Katrina splendor. If you’re still in the giving mood and if you have the means to help, take a moment to check out the Bush-Clinton Katrina Fund site (http://www.bushclintonkatrinafund.org/) and see how you can help.

Thanks again for visiting!

Just wanted to take a moment or two to mention a couple of updates we’ve made to the site, including new ways you might be able to help.

First, you’ll notice the new “eBay Store” tab in the horizontal menu running across the top of the screen. As many of you have suggested, we’ve opened up an eBay store as yet another means to whittle away at Anikka’s upcoming medical bills. Most of the items up for sale are Anikka’s old baby clothes, etc. (sorry, but no more Playstation 3’s). Silja (Ani’s momma) tries to add a couple of new items every day, so please check back often if you’re looking to purchase something for your own special little lady.

Second, we just learned about a fantastic fund raising site called ChipIn.com this afternoon (thanks to Josh Koenig for pointing us in their direction). Once we took a look at what they were offering, we had to include their widgets on this page. You might notice the new ChipIn area in the upper-right where the old “Donate with PayPal” link used to be. Donations that come through that link still come to us through PayPal, but we now have the ability to dynamically display our progress on the page. The downside, of course, is that they currently don’t have a way to add to the graph any donations made outside their system, so to the naked eye it would appear that nobody’s donated a dime yet. Not true. As of today, generous friends, family, and strangers have combined to contribute roughly $1700! Still a long way from our goal of $15,000 (approximately half the expected cost of the procedures), but a great start!

In addition to the pretty graph, ChipIn also makes it easy for other bloggers, MySpace users, etc. to use their own site to help. If you click on the “Copy” link in the ChipIn window, then click “more options,” you’ll find step-by-step instructions for adding that code to your own site.

Thanks again for all your help and support!