Thursday, June 30, 2011

Complications Lurking

Unfortunately, though as predicted, we will NOT be filling my expanders this weekend.  However, it is for reasons unexpected... 

Last weekend, mom sent Dr. Bauer an update after the fill, and included a close-up picture of a bruise that had been developing on the larger expander:

The bruise is the purplish spot
at the top of the expander
Mom and dad thought nothing of this spot, which had been there a couple of weeks, until they heard back from Dr. Bauer.  In his words, "the small bruise is a result of too much pressure against this area of the flap... at this point there is at least some minor vascular damage to the flap... from here on out we need to be careful with that area... and we might need to design the flaps differently to minimize the risk of a problem."  Huh.  This was a bit of a surprise, since everything had been going so well, or so we thought. 

We're not sure what this means - whether we will lose this part of my new skin, whether we will have to reduce the amount we try to fill on that side, or whether we will have to skip more than one fill.  For now, we are just following Dr. Bauer's instructions and trying to help the skin recover.

One of the things we are supposed to do to help the skin is to keep it well lubricated.  Aquaphor is Dr. Bauer's product of choice for many things, and this was not an exception.  So mom and dad slathered on the aquaphor.  Then...

Well I'm not sure if you can see it in this photo, but I broke out in a huge rash all over my expanders, back and belly from all the aquaphor!  Luckily, I happened to already have an appointment with my dermatologist today, Dr. Price, and she prescribed a steroid cream to help with this rash.  But, we can't use the aquaphor any more!  Oh, and the steroid cream is known for "thinning the skin" so we have to be super careful with it.  Sometimes, it just feels like we're mouses in a wheel on this adventure!

To top things off, my molars decided it was time to break through, and of course, as always, the teething is causing a great deal of congestion.  Runny nose + bruise + rash = no fill this weekend.  Dr. Bauer said to work the creams over the weekend and send some new pictures on Monday.  Maybe we'll be able to do a fill early next week.

The important thing is that we don't jeopardize the skin, and Dr. Bauer is very cautious about that.  We trust that this will all work out and we will be able to get on with things before long.  Surgery is 5 weeks from today, and we have plenty of time to fill my bubbles up.  Nevertheless, prayers are always welcome.

Saturday, June 25, 2011

Feelin' Like a Pro!

This week's expansion was a bit of a surprise because we had to do it early!  You might have guessed it, another cold is going around my household... or so it seems.  My sis woke up yesterday looking fine, but saying she was sick.  As the day went on, mom could see the slightest beginnings of a cold.  Rather than wait to see what happens, or if I wake up with it too, mom and dad decided to do my fill last night.

It was only about a day and a half early, so Dr. Bauer's office approved the schedule change.  The expanders felt softer than they did after my last fill, but still a bit firm, so mom and dad weren't expecting much.  But... IT WENT GREAT!!  This was probably our best fill yet.  It was smooth and easy and I didn't even notice the needles going in.  And, to top it off, we got the "regular" amounts in (75 cc right and 45 cc left), even though it was early.  Mom and dad are really getting to be pros at filling my expanders!

My "bubbles" are certainly big, and the larger one is almost like a little shelf for my arm to rest on now!  We are so excited about how well this is going.  Check it out...

315 cc on the left

445 cc on the right

Now we'll just wait and see if this cold develops - and if I get it - and if we miss next week's fill.  Man, this is just a little roller coaster of an experience.  Can't wait to see what happens next!

Monday, June 20, 2011

Half Way There!

Wow, we are half way through my expansion already!  My last surgery was just about 6 weeks ago, and the next one is about 6 weeks away.  And, the even better news is that my expanders are half full, even though I missed one fill!  This week's fill was a couple days late because I did end up catching a cold, but we still got it done early enough that we won't miss a week.  We have renewed goals of 700 cc for my right expander and 500 cc for my left one.  We understand it just won't make it to 700 on the left and we accept that que será será.  We're sure Dr. Bauer will still amaze us! 

So, at this time, my right expander has 370 cc and my left is filled with 270 cc.  The skin looks beautiful and Dr. Bauer's office says I look great.  We are so thankful. 

Hey, what are these bubbles all about?
We are also very pleased to announce that the second printing of cookbooks arrived an entire month early!  So, yes, they are available.  Barring unforeseen complications with future procedures, this will probably be the last printing.  If you are out-of-state and wish to order a large number, please contact us directly at so we can arrange bulk shipping.  Otherwise, order through the site here, through mom, or by emailing us.  Thank you!!

Saturday, June 11, 2011

So Far, So Good

We did it!  We made it through a fill on our own... sort of.  The last couple of weeks, we've been doing my fills in the evenings, after dad gets home from work, and when someone else can be here for an extra set of hands (which we've always really needed).  This week threw us a curve ball, however, when my sister developed a cold the night before our "fill day."  If you remember, even being under the weather ever-so-slightly will cause us to miss a fill.  And, generally, I catch all of the colds my sis brings home.  So, dad came home from work early Thursday to make sure we could do a fill before I started showing symptoms as well.

The fill went fine, though I cried each time the needle went in.  That didn't make sense since I should have been numb, but I only cried about that for a few seconds and then dad could proceed without interruption.  We did the first side entirely on our own and got 75 cc in!  It went smooth as silk, and I just hung out drinking my bottle while it was done.  But I never like doing the second side.  I don't like the restraint especially.  Luckily, by the time we started the fill on the other side, my uncle came by for a visit and he helped with the distractions.  Because that side doesn't seem to fill as well (we only got 45 cc in), it really only takes about 3-5 minutes to get it done and mom and dad now know that they could do it on their own if they had to.  It's just easier on all of us to have someone else here.

Mom did ask Dr. Bauer's office about the difference in how my expanders are filling, and it's just kind of the luck of the draw as to how they each fill. There are so many variables affecting this process.  But they assure us things look great, and we shouldn't worry about the "number" we get in each time.  We are simply thankful that this expansion is going successfully, and though we proceed eagerly, we also proceed with caution.  We are well on our way to 700 cc in the right side, but have faced the fact we won't get near that on the left.  We trust in God's plan, and look forward to seeing the results He is leading us toward.

On one other, and very happy note, I had my standard neurologist follow-up yesterday and my other Dr. B said I look just fantastic.  He has no concerns about my development, and is happy - impressed even - to see how well I am doing.  I don't even have to go back for six whole months.  We continue to pray every day that my NCM remains asymptomatic, and are eternally grateful that God has blessed me with such a mild form of this rare disease.  Please keep this in your prayers as well. 

So, here are the results of Fill #3 - 230 cc in the left and 290 in the right.  Please also help us pray that I don't catch my sister's cold so Fill #4 can proceed on time.  Thank you for your continued support.  We couldn't do this without all of the love we have coming our way.

Thursday, June 2, 2011

Flew Through Fill #2!

The old adage "Live and Learn" couldn't be truer.  Mom and dad made a lot of mental notes during and after my fill last week, and boy oh boy did it pay off.  This week's fill went much better than last week.  It wasn't a completely smooth ride, but it was significantly less bumpy than last time! 

Over the last week, we could feel that the expanders were softening, just as they should, to make room for more saline.  By this morning, they were noticeably softer.  My Nana had brought us a medical adhesive to use when applying the lidocaine, and it worked wonderfully.  It obviously follows that my port sites were completely numb for the fill.  I did get a bit grumpy, and we had a little difficulty mid-way through, but it was probably because I was tired and don't like being restrained for the procedure.  But in the end, it was entirely successful.  We got 75 cc in my right expander - which is now up to 215, and 60 cc in my left one, which now has a total of 185.  Good news all around. 

These suckers sure look big already.  We can't believe they're less than 1/3 of the way full.  From the side, it looks like there's a small football under my skin!  See for yourselves....

If you'd like to see what it's like to go through a fill, please check out this link (courtesy of The Nagel Family,

We are so thankful that this round seems to be working out, and my August surgery can't get here soon enough.  Please keep those prayers coming.  This is a true gift from God.