Monday, May 27, 2013

Almost there...

That sigh of relief has not yet arrived, but we are almost there.  Just about two weeks to go and we can breathe again.  But we have come a long way from the rocky start of this round, and things continue to be stable.  We'll take that!

My bubbles are really something!  And, if you can believe it, BOTH of my expanders have REACHED CAPACITY!!  Yup, we have met the 500cc goal for each expander, even though we have 2 fills left in this round!  Precisely, my expanders are currently at 545cc (left) and 500cc (right).  So while we have had a small share of problems over the last 10 weeks, God has certainly graced me with good volume.  We continue to pray that I do not develop any sort of infection or skin damage, and that the skin recovers nicely after surgery as well.  Your prayers for these things are appreciated as well.

Check these bad boys out...

We often get this question: "How in the world does Joshua sit down?"  And the answer is: "Just as he always has."  It's true - these expanders have not impeded me AT ALL.  I sit, I lay, I run, I play.  I do all the things I always did and I don't even notice these jugs.  They don't bother me in the bath.  They don't bother me in the car seat.  They don't bother me in bed.  Or anywhere else for that matter.  That said, I don't always choose to sit on my bottom.  It's just easier to sit on my knees.  But when I have to sit on my bottom, it's no problem.  What a relief that has been.

The real challenge is going to come AFTER this next surgery.  While there isn't much nevus left, this is going to be a big one.  It's a matter of getting to the area that we've been afraid of getting to all these years.  It has to be done; no doubt about that.  But I have a feeling I'm going to like it even less than I like the other removal surgeries I've gone through.  Please pray for me to have a good recovery, good healing, and good pain management.

Because we are still proceeding cautiously, we will probably combine the last two fills into one and just do it mid way through the rest of this round.  My expanders are very tight, and are not softening up to let much more saline in anyway.  So the plan, as long as Dr. B approves it, is to wait about 10 days, do one more fill, and be DONE!  We see no need to push the limits here.  Volume is good.  Skin is beautiful.  And we want to keep it that way.

We leave 2 weeks from tomorrow for surgery on June 13.  As I said, we are almost there.  Almost.  We'll let you know when we make it.

Wednesday, May 8, 2013

Stability... and Happy Birthday to ME!

I am now a little over half way through this round.  We return to Chicago in just about 5 weeks, actually.  In  my last post, I emphasized that we are proceeding cautiously, and that has not changed.  There have been a few more minor complications since then, though things appear stable for now.  Stability is good, and we are happy not to push the limits this round.  We just want to make it to the scheduled surgery date.

A few weeks ago, the area of my right stitches began to bleed.  It was strange, and I've never had problems with my sutures in the past (during expansion, generally the sutures are left in).   Mim thought the area may recover if we ditch the stitches, so mom called up Kellie (my amazing dermatology RN at PCH), who graciously invited us down right away for a suture removal in the office.  I handled the procedure like a champ, which is my standard demeanor when it comes to all things nevus these days.  And within a few days, the area was healed and looking great.  We were back on track and able to resume injections.

Then the left side started showing signs of irritation.  Here we go again, mom and dad thought.  Except that, banking on my good behavior for the suture removal with Kellie, they decided to remove my stitches at home!  And they did.  And I was a champ.  Again.

So now both sides are sans sutures, are healed up, and are looking good.  The expanders go back and forth from having a bit of a pinkish/reddish tint to normal, and generally we believe it's from the pressure and friction that results any time I sit, lay, or move around.  So, pretty much, they are always discolored a little.  As long as the color isn't caused by infection, it should hopefully not be a problem.

With all this extra excitement, mom and dad are doing my injections very carefully.  They have yet to fill either expander as much as they could.  That said, the expanders are still filling very nicely.  At this point, the left is at 465cc and the right is at 390cc, and theoretically, there are 5 fills to go.  Each expander is technically 500cc, but they can double their capacity if the skin allows, so even though we will reach 500cc soon on that left one, the injections should still be ongoing for a while.

Check out my bubbles.  Yep, I've got some "back"...

They are looking good indeed.  At this point, I'm not having much trouble sitting down, so my activity is still relatively normal.  I occasionally get some chafing but we have a variety of remedies for that.  So we are happy with where we stand, and pray that things continue to be stable so that I make it to my surgery date of June 13.  Please pray with us that the incisions keep looking good, infection does not develop, and I have no additional complications.  

Oh, and we've had one more bout of excitement since the last post.... I turned THREE!!!  Yup, I had a birthday, and what a birthday it was!  Mom and dad rented a FIRETRUCK for my party.  It was so awesome!  My buddies and I all had the best time.  Take a gander...

BFF and nevus buddy Brayden didn't want to be
in the firetruck pic (above) but he sure
was there and he sure did have fun!
Yes, mom and dad sure do know how to make my birthday memorable!  I was the VIP!!  I got to sit in the driver's seat, ring the siren, light the lights, try on the gear, play with the hoses, and go for a ride.
Everyone had a fantastic time, and I am so excited to be the big 3 now!