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.