Thursday, July 28, 2011

We Did It!

I can't believe it... we have completed an entire expansion.  It has been 11 very short, yet very long, weeks since my last surgery when two expanders were placed.  Looking back 7 months ago, this is kind of surreal, because we were facing the possibility that this may never happen.

One week from today, I will take the special Highland Park Hospital snooze, and when I wake up, my bubbles will be gone along with a good deal of my nevus.  We don't know what lies ahead -- what Dr. Bauer will be able to do in this surgery, what kind of surgery I will need next, or how many surgeries I will need after this -- but we are eternally grateful to the Lord for getting us through this successfully.

We did the final injection last night - on the smaller side only, of course.  It was hard to push in even 20 cc, and we knew it would be the last one.  We have learned to read the signs, and we know that my little body has endured as much as it can in this round.

We continue to treat the bruise on the other side, and it is lightening up a bit and looking very good.  At my pre-op appointment last week, the pediatrician said it shouldn't be a problem.  We look forward to finding out.  

In the end, we did 6 fills on the right side, ending at 505 cc, and 10 fills on the left side, ending at 470 cc.  It's not all that close to our original goal of 700 each, but we are happy with it and Dr. Bauer says we are "in good shape."  All in all, the complications we've had during this expansion have been minor.  The most important thing to remember is that we made it through this round without infection, which is miraculous considering my history.

So take a look at me and my bubbles.  It will be the last time you see them.  If I do have another round of expansion, Dr. B says the expanders will probably be below the nevus next time.  That is an entire other ball game though, and one we will explore if and when the time comes.  For now, please help me pray for a successful surgery and recovery.  The same goes for my buddies Sully (from South Dakota) and Zac (from Arizona), who are both having surgery on the same day as me, Brooklyn (from Montana), whose surgery is 4 days after ours, and Aiden (from California), who goes in a couple of weeks later.  I'm happy to also report that Brayden came through his surgery with flying colors.  He is a superstar, as I knew he would be.  We are little, but we are strong.  That said, we could all still use your prayers.  Thank you. 

My bubbles at their max... 505 cc on the right and 470 cc on the left

Right Side (505 cc)
Left Side (470 cc)

Saturday, July 16, 2011

Rollin' With the Punches

As it turned out, the bruise did get a bit worse after the very light fill we did with the right expander Tuesday night.  Thankfully, it is looking better now, but we have accepted that it's met it's maximum and we can fill no more.  All things considered, we've done great.  We will have done only 6 out of 11 fills on that side, but at 505 cc, we have gotten it more than two-thirds to our goal of 700.  Not too shabby.

The left side is slowly catching up, and we just might get it there.  Dr. B gave us his blessing to do the fills every 5 days on that side -- so long as there are no signs of stress on the skin.  Although that side is moving along slowly, the skin is absolutely perfect.  We will be very careful to keep it that way.

So yesterday, being the 5th day after it's last fill, we went ahead... but with an audience.  My little buddy Brayden, who is almost 9 months old, came over to check it out.  Brayden is leaving for Chicago TOMORROW for his first surgery.  I know he will be the super star I am, but we still pray for him and ask that you do too.  It's really amazing that Brayden lives so close to me - like 20 minutes away - and his nevus is really similar to mine.  We are going to be great buddies!  Check out Bryaden's story at

The fill went about perfect too.  Mom and dad are such pros at doing the injections, they hardly have to think about it anymore.  They got 35 cc in again, and it is now at 420.  We hope that it matches the other one by the time we go back in 2 1/2 weeks.

For now, although we are a tiny bit disappointed about the way this expansion has worked out, we are still ecstatic that we were able to exapand at all (remember back to the first round).  Please help us pray that Dr. Bauer doesn't have to cut out the bruised skin.  Considering where it is, it would mean a lot more cutting and stitches and recovery and scarring.

420 cc on the left, 505 on the right
Mom can only get a pic sometimes when I'm on the move!
Brayden and me!

Wednesday, July 13, 2011

Back in Business?

We've been on hiatus for a couple of weeks -- at least on the expander that became bruised.   The bruise is still there, but a tad lighter.  Dr. B had us skip a couple of fills, but last night gave us the green light to go ahead and get started again.  But proceed with caution, he warned.  And we did proceed.  And it was with caution!

Mom and dad did a light fill on that expander last night.  60 cc went in easily, and we stopped there even though the expander was still a bit soft.  The bruise is the result of too much pressure on the skin, so we can't "fill up" anymore.  Nonetheless, 60 is a good number.  The right expander is up to 505 now!

The reason we question whether we are back in business is because the bruise looks a little darker this morning.  It is so hard to tell, but if that's the case, last night  may have been the last fill on that side.  We'll email photos over to Dr. B next week and see what he thinks.  Two photos of the bruise follow this post - one from a couple of days ago and one from this morning - so you can see for yourselves. 

The left expander is it's own story.  It has been inching along since we started, and the last couple of weeks have been no exception.  We continued to fill that side even though we were skipping the right expander.  Both weeks, it took a measly 35 cc.  We last filled it on Sunday, and it now stands at 385 cc.  The good news is that Dr. B said we can try to push an extra fill or two in that side as long as we are careful and watch for stresses on the skin.  So we're going to try to fill the left expander every 5 days, instead of every 7.  That will give us one extra fill and hopefully get it up to about 500 cc.

We have three weeks to go in this first true round of expansion.  That means we have already made it through 9 weeks!  We are very excited and anxious for this upcoming surgery, and to get through these last few weeks before the big day.  We pray that I don't get sick and that we can successfully complete 3-4 more fills on each side.  We aren't going to make our original goals, but at this point, we can still get pretty darn close.  Time will tell. 

Here are the latest photos of me and my bubbles...

Just doin' my thing.  I don't even notice my bubbles!
Right expander at 505 cc
Left expander at 385 cc
The bruise this morning.

The bruise pre-fill.   The sticky stuff on top of it is Tegaderm.  It's supposed to keep it moisturized and relieve the pressure.