Thursday, October 25, 2012


Wouldn't you know it, the "perfection" I was experiencing had to come to an end. Right?  I don't want to sound jaded or anything, but we just knew that it would. That being said, the issues that have come up are nothing new, nothing surprising. For the most part.

As usual with my removal surgery, I've had some wound issues.  Generally, my incision begins to split about a week post-op and it takes 4-6 weeks to heal up. Imagine our surprise when that split made an early appearance this time -- on Day 5.  Now, this has no significance.  We were just not expecting it so quickly.  Split #1 started out small, and quickly emerged into something more.  It was soonafter joined by splits #2 and #3.  What was more interesting to us was that the tear went into the nevus this time, rather than the new skin.  This does have significance. Positive significance.  The scar tissue that will form will not require any additional excision because it's in an area that will already be excised.  So this is a first for us and is definitely good news.

Mom and dad have been doing the wet to dry dressing three times a day, yada, yada, yada.  They know what to do.  They know it will heal.  They are not worried. Or at last they weren't until I had an unexplained fever last week and a little green substance coming from the two smaller wounds.

So, off to the doctor we went.  Nothing seemed too concerning, even with the otherwise symptomless fever, because there was no appearance of infection.  The wounds actually looked pretty good, all things considered.  Indeed, the largest one was healing faster than ever before.  But we take no chances with this process.  Better to have a professional take a peek.

Dr. Miller, my wonderful and amazing pediatrician, confirmed that there was no infection.  Whew!  But she too was concerned about the green substance.  No harm in doing a culture, so she cultured both smaller wounds.  Three days later, we heard a word we were hoping never to hear again... Pseudomonas.  That is the bacteria in my wounds.  That is the bacteria that utterly demolished my first round of expansion, caused an intense infection, and required emergency surgery just two weeks after my expanders went in.  Great.  

Ok, there are a couple of ways to look at this.  So, we are giving it our best to go the positive route.  Yes, the Pseudomonas is still present.  Apparently, it never left.  It is what the medical community calls "colonized" on my body.  Will it always be there?  Probably not.  But it is there now, and apparently all of the efforts mom and dad have put in to getting rid of it over the last almost-two-years have been fruitless.  However, we recognize that it has been almost two years since this stuff actually presented a problem.  I have kicked the tukas of seven other surgeries since that first awful experience without it presenting a problem.  So, there is the possibility that I will continue to get through surgery without infection.  Yes, the opposite possibility also looms.  But all we can do is push forward, and pray.  Pray for the best outcome, and pray that this bacteria, while on my body, remains inactive.

Yesterday, we wrapped this round up (at least when it comes to doctors, hopefully) with my suture removal.  As last time, it was performed in the O.R. while I was resting quietly under the influence of my dear friend, anesthesia.  So all that is left now is a little healing.  Everything looks good.  Everything is making progress.  Wound progress is slow, but we are used to that.  And, overall, we are VERY happy with the way this round went, my surgery, and the recovery period.  Lots of thanks are due -- to Dr. Bauer and his truly spectacular office - Mim, Susan and Kristi, to all of our understanding and helpful friends and family, to everyone who prays for us.  Thank you.

For your viewing pleasure, I saved the photos for the end.  They are graphic.  No surprise there, but you've been warned. Here is the chronology of my healing through today...

October 5, 1 day post-op,
during my first dressing change
October 9, split #1 rearing it's ugly head
October 10... yep, it's ugly!
October 14.  Healing has started in split #1,
but split #2 is starting to show (in the center).
October 16
October 18.  This is split #3.
Still October 18.  Split #1 looks very good,
believe it or not. Granulation tissue is
forming nicely.  Split #2 is in full-swing.
October 25.  Stitches are out.
A tacky, medicated bandage now covers
the smaller wounds. The larger is
now less a wound and more a healed area.
Hydrocortisone covers it three times a day
to help it make the final transition into scar tissue.

Wednesday, October 10, 2012

Wow. Just wow.

We have made it through my 8th surgery, and to say it went well is an understatement.  This entire round, from beginning through recovery, has been unexpectedly extraordinary.  We all know the expansion was completed without complication, and that we brought Dr. Bauer a lot of really beautiful new skin to work with.  But to actually see what he did with it continues to amaze us.  Dr. Bauer is an artist.  A miracle worker.  Our hero.  

I am doing exceptionally well.  The surgery took about 3 hours -- twice as long as Dr. Bauer predicted.  That made my parents very nervous, but this is not an uncomplicated process, and they are acutely aware of that fact.  When my parents found me in recovery, I had already been awakened from the anesthesia and given some morphine through my IV, which helped me fall back to sleep.  They watched me sleep for about an hour, until the nurses had to wake me to make sure I was ok.  We then went to a room, where I slept a bit more, had a few snacks, and asked to go home.  And, sure enough, we did!  We left the hospital a little less than 12 hours from the time the nurses took me back to surgery.

Once back at the hotel, I ate a full meal and even walked on my own!  No one could believe how well I was doing.  And all this was done on simple over-the-counter pain medications.  The next morning I was completely walking on my own, and pretty much back to my joyful personality.  I admit that, to this day, I cannot bend my body, sit, or pick anything up.  But other than that, I am - and have been for days - me again!  Oh, and I ditched the pain meds 4 days after surgery!

So, before I reveal the results from this surgery, let me take you through a quick pictoral tour of where we've been...

May, 2010... just after I was born
April, 2012... after 6 surgeries and 3 expansions
September, 2012...
just before surgery #8 with three full expanders                                             
October 5, 2012... after surgery #8!

And I am done with surgery for 2012!!! We know that 2013 will bring us some surprises in the way of surgery; I will actually undergo as many as 4 surgeries next year.  And we are praying that next year will be my year -- that I will become nevus free.  This has been a long haul, and to know there are still so many surgeries left is a little difficult to grasp.  But there is a method to all this madness.  And this process, after all of it's travels, troubles, and victories, deserves a happy ending. So we shall seek it.  Next year.    

Sunday, September 30, 2012


Many people strive for perfection of one thing or another.  It is rarely something "given" to you,  but instead something you have to earn with hard work, persistence, and dedication.  Perfection is hardly something I have mastered -- after all, I'm only 2!  However, today I can say it.  I can admire it.  I can relish in it.  And I can be grateful for it.  I have been blessed with perfection in a way I never dreamed possible.  In a situation in which I had no control.  I have just completed an entirely perfect round of expansion.

You may have been wondering where we've been and what we've been up to.  Well, the reason for my absence over the last few weeks is nothing more than that things have been going smoothly, and there really, truly was nothing to report.  We continued with my injections on schedule every week, even when I developed a slight cold.  Nothing has held us back this time, which is not just wonderful, it is amazing.  While I can't say it's unheard of, I can say that my parents, and the parents of my friends, enter a period of expansion with almost an expectation of complication because it seems complication is more the norm than the exception.  Case in point: I have 5 friends who recently began a period of tissue expansion, and 4 of them have already faced at least one complication.  Yes, I've had my own share of complications over the last three rounds of expansion.  And while there is mental preparation for problems, there is also hope that things can go smoothly.  But to actually achieve the things that we hope for -- to complete a round having done every fill, and having filled every expander more than its size -- is simply wondrous.  We couldn't be more grateful that God has blessed us with this gift.

My "bubbles" are, as I said above, OVER their capacity.  All of them!  It's just awesome.  My back expander (a 750) rests with 790cc, my left leg (a 350) has 445cc and my right leg (also a 350) has 385cc.  To say we've done good is an understatement.  We've done great!  But we were also lucky.  This is a process that is entirely out of our hands.  And to finish without having hard times to reflect on is almost surreal.  Again, we are so very thankful.

Take a look at how far I've come since my expanders went in July 12...   

July 18, before any injections

September 30, after 11 injections. 
Back expander at 790cc, left leg at 445cc and right leg at 385cc

"Stop taking my picture, mom!"
In less than 36 hours, we will be off to Chicago again, and I will face surgery #8 on Thursday.  While we have done the best we could possibly do with this expansion, the results to be yielded are still unknown.  We believe Dr. Bauer will be pleased with all of this beautiful skin he has to work with.  And we cannot wait to see what he does with it!

We are asking for a lot of prayers this week.  Not only am I facing more travel and another surgery, but many of my best buddies are facing their own troubles in their expansions.  Brayden, Aiden, Zac and even Sully have had some rough patches with their new expanders.  We hope and pray that they can all overcome their complications and return to Dr. Bauer with beautiful bubbles like the ones I am sporting.  Please pray with me.  For me.  For them.  For all of the beautiful nevus babies out there riding this roller coaster.      

Sunday, August 26, 2012

You'd Be Surprised

Things continue to go well in my expansion.  We are all so thankful that it has been uneventful.  Really, we are just trying to go about our lives, for the most part, with a few hours on Sunday morning set aside for my injections. 

This gives us a lot of time to reflect.  When it's going smoothly like this, the process of tissue expansion appears to be easy, simple, and routine.  To some extent, that can be true.  But what's the hardest part of all of this?  You'd be surprised.

It would be easy to say that surgery is the hardest part.  It's true, surgery is rough.  It's rough on all of us.  And we will never be happy that I have had to endure so many surgeries, so much trauma, so much pain and emotional distress.  But I would venture to say that's not the hardest part.  Surgery comes, surgery goes.  I heal.  I get over it.  And then I kinda forget about it.

You might expect that wearing my bubbles for 12 weeks is the hardest part.  Nope, that's not it either.  Once I adjust to them, these big jugs just become a part of me.  They certainly don't hinder my activity level!  I run, I jump, I play, I climb... you get the picture.  I even learned to crawl and walk with expanders in last year.  I've just gotten used to them.  It's like they're not even there.  Oh, by the way, check them out after today's fill ---

My back is up to 550cc and my legs both have 255cc

It's true these can be a bit inconvenient.  Mom definitely has a hard time finding clothes that work with these things.  We have to make constant adjustments to the carseat, and have made changes to my bed and changing table too.  But that's all easy to do.

It used to be difficult completing the fills.  I would get so anxious, fearing the pain that lay ahead.  But luckily, the numbing cream works about 99% of the time and I don't really feel much.  So I've gotten over that too, and I've realized the process is no big deal.  So, the weekly, multiple injections are not the hardest part either.

It's not the lengths we go to protect my expanders -- the antibiotics I have to take when I get the slightest glimpse of a cold, the constant doctors appointments, the lotions and creams that get slathered on every day, or even the bandages I have to wear in the extreme Phoenix heat.  It's not the wound dressings we have to do three times a day for six weeks when my skin tears during recovery.  

Nope, it's none of that.
What's seems to be the worst is the impact this has had, and continues to have, on our everyday lives.  That part is not as visible as the rest.  Not as understood.  My family, once a group of social movers and shakers, has gone MIA since my surgeries began in December, 2010.  We have to lay low a lot of the time, losing contact with friends and passing on party invitations, playdates, and outings in places that are "too public."  Germs are feared in our lives more than in most peoples, because even the simplest cold could cause a delay of surgery, a missed injection, or even a serious infection that can completely torpedo a round of expansion (which I had the opportunity to experience myself).  When other kids get to go to Toy Town or The Children's Museum or even simply the play structure at McDonald's, I have to stay home.  Or worse, I have to watch my sister in her swimming lessons, standing outside the glass and not understanding why I can't "swim too."  Being excluded and missing out on childhood because something could damage my surgical plan -- that is the hardest part.       

But we manage.  We do this because we need to.  Because it is the right thing to do.  Because we are lucky enough to be able to, and literally have the best doctor in the world to do it.  And most of all, because it will give me a better life.  That, and that alone, makes the process tolerable.  And we will always be grateful for having done it.   

Tuesday, August 21, 2012

Half Way There!

This last fill was the half-way mark of this expansion!  We have been home for 6 weeks, and we leave for Chicago exactly 6 weeks from today.  My expanders, however, have surpassed the the half-way mark!!  My current totals are: 475cc in my back expander (which is a 750cc expander), 225cc in my left leg and 235cc in my right leg (both of which are 350cc expanders).  So if things continue as they have been going this round, I should return to Dr. Bauer with awesome volume and lots of great skin for him to use.  We pray every day that the second half of this round is as uneventful and smooth as the first.

Mom got some great shots this week...

I am all smiles while daddy fills my back expander!
A close up of the deed.
Playing on mommy's iPhone to keep me distracted!
Back is at 475cc, left leg is at 225cc and right leg is at 235cc

You can really see how the expanders are becoming an extension of my body.  The only little issue we're having is that the right leg expander has a couple of sharp points (you can see one of them in the above photo).  We are hoping it will fill out soon, because the stress could begin to break down the skin.  For now, mom and dad keep some foam tape over the points, which helps to disburse the pressure. 

Please pray with us that we are able to return to Chicago as scheduled on October 4 after an uneventful and infection-free round of expansion.  We never take for granted that it is going well, though we thank God for this blessing.  Complications can arise at any time, but we are hopeful that we won't see any this time.  Stay tuned... more to come!

Sunday, August 12, 2012

Easy Does It

This round has been proceeding smoothly, which is always nice to say.  And while we don't take that for granted, we are taking the time to reflect on the last year and a half (plus a few months), and look at how far we've come.  And I don't mean in the nevus removal department.  It is truly amazing how "easy" this process seems to be to my family now that we've got so many rounds, so many surgeries, so many fills under our belts.

Because I have personally been doing so well this time, today mom got out the video camera for the first time during a fill.  You can see for yourselves how this is just a part of our lives that we have gotten used to...

In the end today, dad pushed 60cc into my back, 35cc into my left leg and 40cc into my right leg.  We might have been able to push a little more, but as I so plainly say above, easy does it.  There is no need to rush things along, especially when doing so can cause complications.  We are keeping things on track but also keeping them under the radar just a little to make sure they stay on track.  We are very happy with the volume after only 4 fills -- 415 in my back, 185 in my left leg and 200 in my right leg.

And while this does appear to be routine, and it is in our reality, we still pray every day that it remains an uneventufl, simple, and "easy" process whose end is in sight. 

Tuesday, August 7, 2012

Going Strong

I am about four weeks post-surgery and three fills into this expansion. So far, so good. My bubbles are growing nicely, and they have yet to bother me, although I am acutely aware of them. We were able to move my injection back to Sunday morning this past weekend so we can stay on schedule. The volume dad was able to push was amazing.  My back expander seems to be more flexible than ever before, taking another 85cc.  The legs are doing well too, with my left taking 40cc and my right taking 50cc.  We are still proceeding cautioiusly, but check me out...

Back expander with 355cc, left leg with 150cc and right leg with 160cc

You can see that the puffiness on that bottom port has gone down as well.  I guess we'll never know what was going on there.  But that's ok.  We are just happy things are going smoothly.  Of course, we don't take this for granted.  I still have 2 months to go, and we pray every day that the rest of this expansion goes just as well as the beginning.  Thank you all for your continued support and prayers.

Wednesday, August 1, 2012

Back on Track

I'm happy to report that nothing came of the fever that was stumping us last week.  It came, it went.  Who knows if it was a fluke or if the antibiotics Dr. Bauer started me on right away took care of the problem.  It lasted only one day and I didn't develop symptoms of any other illness or expander infection.  Whew!

Dr. Bauer asked us to get through the weekend and check in with the office on Monday before doing the next injection.  Since I was doing so well, we got the go-ahead Monday morning and did the fill later that day.  Things went well and dad got 90cc into my back expander!!  We have never gotten that much injected at once.  My legs each got 30cc of saline.  They could probably have taken a little more, but we've been advised to take it easy on the legs at the beginning of this expansion.  It's going to get difficult for me to walk with all the extra weight on my legs, so no need to go into this expansion with guns blazing.  As long as we complete all the fills, we'll get the volume we want.

Waiting for my fill.  Mom and dad use a "silly shirt" (the mesh medical bandage) to help hold my lidocaine covers in place.  It made me feel better for "Tiggy" to have one too!
So here's my bubbles, really beginning to fill out...

Back at 270cc; Legs at 110cc each

We are so thankful that nothing came of last week's complications.  We are back on track and looking forward to getting through this expansion.

Friday, July 27, 2012

Trouble in the Midst?

Hmmm.  We've hit our first bump in the road, but it's presented us with a mystery.  I woke up yesterday, and mom could hear that I was fussy even before she entered my room.  When she picked me up, she immediately knew why -- I had a fever. 

Before I go any further, let me say that fever is something we want to avoid at all costs during expansion.  It could mean nothing, or it could mean everything.  I could simply be developing a teething fever, or I could be developing an expander infection.  I may need oral antibiotics, IV antibiotics, or emergency surgery.  Only time will tell, but fever is not an indication of anything good.

Of course, the first thing mom did after taking my temperature (which was only about 99.5 underarm at that point) was email Dr. Bauer, Susan and Mim.  Then we waited.  And waited.  Mom wanted to see what would happen without fever-reducing medications for a little while.  It seemed to be a good sign that the fever wasn't going up, and after about 2 hours she gave me some Tylenol, which promptly brought it down.  What's strange is that there were no other apparent problems.  My incisions still looked good, my expanders and ports were fine and not tender.  I didn't  have a cough, sore throat or runny nose.  My appetite was fine and I even got down and played a bit.  We just couldn't figure out what was going on. 

A little while later, Dr. Bauer got back to her and asked mom to take me in to the pediatrician so we could try to pinpoint the source of the fever.  However, the pediatrician was just as stumped as the rest of us.  Nothing wrong with the ears, nothing wrong in the mouth... no apparent problem.  Except that my fever had gone up to 101.4 before my Tylenol had worn off.  Hmmm.

So my pediatrician spoke with Dr. Bauer and they agreed to start antibiotics as a prophylactic measure to protect my expanders.  Honestly, when my fever was down, I was totally normal and happy.  Until bedtime, when I just couldn't sleep.  I spent the first several hours of bedtime waking and crying about every thirty minutes.  To say that is unusual for me is an understatement.  I'm a good sleeper, and I never wake up after going to bed until the next morning.  But when mom came in to give me another dose of antibiotic at 2 a.m., she still could not see anything else wrong with me.  My fever was still down from my bedtime dose of Motrin, and no other symptoms had presented.  Yes, this is a mystery.

We don't know what this means yet except that we will probably have to postpone my next injection.  That, of course, is the least of our concerns for now.  Even an unrelated virus could torpedo this process, so we have some growing concern.  Please pray that whatever is going on doesn't present me with too much trouble, and that it does not impact my expansion.  We will keep you posted.   

Wednesday, July 25, 2012

Couldn't Be Happier

Things are going great!  Really, about as good as we could hope for.  I am healing nicely, still.  My expanders look good.  I am happy and comfortable, although I'm still working out the physical kinks in adjusting to sitting and bending with my new leg expanders.  And we've done my first fill, which I might say was the best experience we've had to date!

Mom and dad prepped me as usual on Sunday for my injection.  When they began to put the lidocaine on, I got nervous and I let them know it!  At that point, they were a little concerned that I would go back to struggling and screaming for the procedure.  But I manned-up and when it came time to do it, I layed down on my belly, put a smile on my face, and played a game on mommy's iPhone while they did the deed.  No tears, no fuss, no muss. 

As instructed, they started slow, and only filled one syringe per expander.  My back expander got 60cc and each leg expander got 30cc, so now I'm at 180, 80 and 80, respectively.

Still playing with mommy's phone.  I am so smart!

My bubbles after the fill.  You can see them starting to fill out now!

Me, in all my glory, and as cute as can be!
My expanders felt great after this fill and each of them easily could have handled more, so my next injection should go really well.  We look forward to finding out!

The only small issue we've encountered so far this round is that one of my ports (the one in the nevus) is very puffy. Take a look...

Dr. Bauer initially thought it was fluid build up, which would make sense because dad pulled my drains on Sunday as well and one of them (which was still draining nicely) was very close to this port.  So, we were instructed to prep for a fill, but to go in with an empty syringe and stop the needle between the skin and the top of the port to attempt to drain the area.  Getting the needle in this teeny tiny space was no easy feat, but dad did a good job.  Problem is, no fluid came out.  So Dr. B said to let it be for now.  There is a possibility that it's just puffy for no apparent reason.  He's seen it in a patient or two in the past, and as long as dad can still access the port for my fills, it shouldn't cause us any trouble.  And, it might just soften and flatten all on its own in time.   

So now we are half way through the week and excited to do my next fill.  We pray that things keep going smoothly and that this puffy port doesn't present any problems.  Keep checking back for more on my adventures!  

Wednesday, July 18, 2012

Let's Do This!

Tomorrow is one week post 7th surgery, and I am doing great!  My parents really weren't sure how this would go over now that I am getting older and becoming more aware of everything in this process.  But if you remember, I was stunning them with my pre-surgical strength and courage.  And today, they are even more in awe of me.  I am a champion. 

Admittedly, the immediate time post-surgery was not good.  I was in quite a bit of pain, upset, and angry, and for the first time the anesthesia was causing some nausea.  So the remainder of the day did not go over well.  We stayed the night in the hospital due to my upset tummy and the need to get my meds via IV since I couldn't take them orally.  But I was already sleeping pretty well by that night, and the next morning I started taking my regular over-the-counter pain  medications without trouble. 

Dr. Bauer came the next morning to change my dressings himself, and then we were on our merry way.  By the time we got into the car, I was feeling much more like myself, and when we got back to the hotel, boy was I ready to eat!  The improvements just kept coming after that.  Saturday was the last day I took pain medication.  Isn't that amazing?  I only took meds for three days!  By Sunday night, I was up and walking again.  And not just a little - I walked half a block!  Monday, I woke up happy, in a good mood, and ready to jump and climb!  Yes it's true -- mom and dad are already chasing me around again!

We are home now and I am feeling good.  I am still having a little physical trouble, but I will adjust in time.  It's hard for me to sit down, and I can't bend over yet.  My legs are sore and tender, which makes me walk a little funny too.  But I don't complain about it at all.  I go about my business, and our days are a lot like any other. 

I am sporting THREE new expanders, which is awesome because we only expected two when we left for Chicago last week.  There is a 350cc expander in each of my thighs (each filled with 50cc during surgery) and a 750cc expander on the right side of my back (filled with 120cc during surgery).  Two of the ports are in new locations, so that is another adjustment, but we are very happy with their placement because they should be super easy to access.  If I keep healing as expected, mom and dad will begin my injections on Sunday.

The expanders are difficult to detect at this point, but you can see small bulges.  Two of the ports are on the left side of my back, and one is in the nevus (it is pretty obvious).  You can also see the drain tubes here, but dad will remove those on Sunday.
Ready for a dressing change!
A fresh dressing and a big smile!  That's just how I roll these days.
You can see from my smile that my demeanor has changed dramatically from the last round of expansion.  I am older, wiser, and much more expansion-savvy!  Only time will tell how I actually handle the fills, but if this is any indication, they should be a piece of cake.  Knock on wood. 

So stick with me to see how we do on this 4th round of expansion.  If it goes well, there is a chance these are my last expanders.  We won't get ahead of ourselves, however.  There are too many variables which can change that expectation, so it is more of a hopeful outcome.  For now, we are thankful that surgery went well, recovery is going great, and the healing process is doing what it should. We are praying that this round is infection-free, that the skin stretches well, and that we have no complications.  In 11 weeks, then we just might be able to really enjoy the thought that these could be my last expanders.  It's in God's hands, and we trust Him.

Thursday, July 12, 2012

The Plan

For the first time since my first surgery, I went to see Dr. Bauer in the office for a pre-op visit. Seeing that this is my 7th surgery, and we had originally planned on 4, and we know this will get us close but it won't be enough to get the whole enchilada, we thought it was good to talk about "the plan."

Dr. Bauer came to see me with an entourage of medical students and nurses. This was test #1 for me, though I didn't know it. My parents are always wary of how I will react to these situations, and as I get older, they don't know if it will get easier or harder. The fact that I've been going around for weeks telling them "no bubbles" while pointing at my leg has not been a good sign. But I passed the "office-visit test" with flying colors. Notwithstanding all of the people who packed into the room to watch Dr. Bauer poke around my naked bottom, I did not cry, I did not fuss, I did not get upset at all. I just hung out and played with mom's iPhone (yes, even at 2-years-old I know how to use this!) and waited for them to finish. Whew!

After my last surgery, Dr. Bauer had talked about expanding the legs only this time. So we were surprised (pleasantly, if you can believe it) that he said he would place 3 or 4 expanders! He is trying to make this my last round of expansion, and will place what will fit safely and still allow me to grow good quality skin. And if this expansion is succesful, the plan is to return for a final excision of any nevus Dr. B hasn't gotten (without expansion) and revision of scar tissue. So, ideally, "the plan" is 3 more surgeries (today included).

I went back for surgery about an hour ago; mom and dad sit patiently in the waiting room to discover what lies ahead for the next 12 weeks. And, they were able to breathe another sign of relief when I passed test #2 -- the "pre-op wait test." I ran into the hospital, goofing around without a care of where I was. When we got to the usual nurses station, I drew back a little, starting to figure it out. But that was it. I am a champion, and I have proved it once more. I didn't fuss, didn't cry, didn't even seem anxious.

So we will see how test #3 goes -- the "post-op test". They should find out anytime...

Saturday, June 30, 2012


Ahh the routine of a "surgical" life.  Three months on, four months off.  And when the "three months on" is coming up, the rest of the routines jump into action.

My four month break from surgery is ending, and quickly.  As such, our regular routine of getting ready to start up again has been in full swing for a few weeks already.  My sister and I have long been pulled out of the social circle.  No playdates.  No public places.  No kids of any kind.  It is important that we stay away from as many germs as possible to keep me healthy for the surgery, and to avoid complications that can be caused by bacteria (which is all too familar to me).   It has been a little boring around the house, but we know this down time will prove worthwhile if we can make this 4th round of expansion the most successful yet.

My pre-op exam was last week and I've been given the a-ok for surgery.  We did have one little surprise in learning that one of my ear tubes is going to fall out anytime.  It's already dislodged and just kind of stuck in my ear.  This should hopefully not cause any problems, but Dr. Bauer (my surgeon, for you newcomers) did want the ear tubes in to help protect my expansions (this is a long story and explained in one of my first surgical posts).  So we'll just have to be extra-cautious in watching for signs of an ear infection. 

After that, we sent Dr. B some new photos so he can confirm his plans for me this time around. In my last post, I showed you the chronology of my healing adventures after the last surgery. Not much has changed since I've healed, but as I grow, my nevus grows with me so we always have to send new photos. Here are a few of the ones we sent over (don't mind the off-center qualities; it's hard to get good photos of a 2-year-old!)...

We haven't heard back from Dr. B on the plan for my next round of expansion, but after the last surgery we did discuss placing an expander in each thigh this time around and leaving my back alone.  Though, potentially, I can see him adding one back expander on the right side as well.  Really, until we see him in the hospital in Chicago, even he won't know what the right plan of action is.  But this is the bright side of having Dr. Bauer on our team -- even though he's almost 1800 miles away, he's such an expert at tissue expansion and removing Congenital Melanocytic Nevi, that we can put our full faith in him without discussing the plan in advance.  If Dr. Bauer can't do it, it can't be done.  And if it can be done, Dr. Bauer will do it, and will do it perfectly.

We have 10 days until we board the plane again, and now comes the routine of washing, buying, packing, and planning.  There's a lot to do as we get ready for this round.  But keeping busy definitely helps to take our minds off of what is coming.  Yes, it's hard.  It's hard on me, mom, dad, and even sis. But we know this is the right thing for me, in so many ways.  And keeping the end in sight is what gets us through.  The pain, the inconvenience, the fear, the anxiety - it will all go away.  But the results and added protection for my health - I'll have that forever. 

Stay tuned to see what's in store for this next round of surgeries, and please keep those prayers coming.  Expanders in: July 12.  Expanders out: October 4.  And we hope not too much excitement in between.     

Sunday, April 15, 2012


Okay, Okay.  I know it's been over a month since I've posted.  Every week I figured, let's heal a little more and then post pictures.  But then the healing moved slowly.  So I decided today would be the perfect day for an update -- today I am 100% HEALED!

It's been 6 weeks and 3 days since my surgery.  Overall, the recovery started out rocky, but once we got the wound dressings under control, everything was good.  While it was a slow process, the multi-day dressings and creams became routine and weren't a big deal.  As of now, I need no more dressings and no more ACE wrap... until the next time.

So what took so long?  Well that "hole" I showed you in the last post got worse before it got better.  And actually, even a THIRD area began to open up before the healing really started.  Take a look...

March 13
The vertical stitches above the larger open area
have popped open here and the skin is
starting to separate upward now.
A week after that happened, I went in to have my stitches out.  Because of how difficult this task was last time, my parents and Dr. Price decided that it would be better to try to remove them under sedation, so we they actually did it in the O.R.  And it went MUCH better than last time!  Dr. Price put some "duoderm" (or as we like to call it, magic tape) over these open wounds, and presto, the tissue filled right in.  Although, it was a little over-zealous...

March 24
The bubbled tissue is granulation tissue
that grew a bit too exuberantly.
Well once this happened, Dr. Bauer gave us a new dressing routine, and we just had to wait it out.  All of the granulation tissue eventually calmed down, and scar tissue formed over it.  No need to worry, the scar tissue will be removed in a future surgery.

When mom unwrapped me today, the last of my scar tissue had formed.  I was finally done!  And thank God, because it's getting hot here in the Phoenix area and I can't take being wrapped in that ACE bandage anymore!  So here is the final result after Surgery #6...

I still have a bit of a road ahead of me, but am so very thankful for tremendous progress that we've made over the last 15 1/2 months.  And while we don't know when I will be done, we do know that my next round of expansion is scheduled to run from July 12 to October 4, 2012.  Please keep those prayers going.  We are really hoping this is my last set of expanders. 

And now it's time for a break.  A real break.  We are taking our very first family vacation next week.  Oh yeah, we've done plenty of traveling since I came along, but pretty much every trip has involved me being poked and prodded in some way.  This time, no doctors.  No hospitals.  No bandages.  Just family and fun.  And Mickey Mouse.