Wednesday, March 16, 2011

NOI in AZ

Nevus Outreach, Inc., the backbone of our support group, has gone a-travellin' and made a stop in Arizona just a few days ago.  We had a wonderful meeting, filled with new friends, new information, and a presentation by my very own dermatologist, Dr. Price. 

For people like me and my parents - in a situation embedded with fears, questions, lack of information and above all, no one around who knows what we're going through - an organization like NOI is not just a luxury; it is the epitome of our new lifestyles.  The nevus "family" we belong to is warm, accepting, sympathizing, gracious, and best of all, full of answers!  To get to spend some face-to-face time with some of them was such a highlight.  We would like to send out a big THANK YOU to the people behind NOI for their hard work and perseverance in making this spectacular organization available to those of us who desperately need it.  Truly, it has been a saving grace.

As I have mentioned before, we are also blessed with a fantastic and loving doctor who watches out for me and my nevus.  She took the time to join us at the meeting and even prepared a presentation about another new technology that we just might try out on some of my smaller spots some day... laser.  We'd heard about the idea of lasering spots before, but no one really had any good information on the technology and how it relates to treating nevi.  Now that we do, mom and dad are happy to know that there is a reliable option available for treating some of my smaller spots once we finish with my surgeries -- or maybe even a little beforehand.  It's nothing we're jumping into, but it's good to have in the back of our minds at this point.

Me with Dr. Price

My BFF, Zac (AZ)

See how well we play together?

Bryan (AZ), Diane (CA), Megan (TN),  Raye and baby KJ (NV)

My new buddy Brayden's mommy and grandma (AZ and IA)

The Rexroats (CA)

Deborah and baby Sophia (NM) with Dr. P and Megan

My BFF again, along with one of mommy's

Dr. P, hard at work!




Saturday, March 5, 2011

Plugging Forward

It took some time, but after consulting with many doctors, including a new infectious disease doctor, we have decided that que serĂ¡ serĂ¡.  There aren't any steps we can take right now that will safely and successfully eradicate the bacteria from my body.  And actually, everyone, has bacteria in their bodies - even sometimes pseudomonas (like me).  So it's not really a foreign issue for surgeons to deal with.  In Dr. Bauer's exact words, "the thing about colonization in these types of wound situations is that you may be able to find pseudomonas in the area but the wound will still be healing or healed.  I can't tell you how often we dealt with this [in the past]."  So, we're taking the good signs -- the fact that I'm healthy, my incisions having healed beautifully, and me hitting milestones left and right -- and running with them.  We continue to pray that I don't have any complications with my future surgeries, in which case we should be able to complete removal of my nevus around March, 2012. 

Now, we eagerly await my next surgery date of May, 10, 2011 -- just 9 1/2 weeks away.  Mom and dad give me "vinegar baths" which supposedly will help to reduce the risk of infection.  This surgery date is still somewhat tentative, however, as Dr. Bauer will push it back if I develop a cold or ear infection during the month of April.  So prayers for good general health are also appreciated, especially since Dr. Bauer will not be performing surgeries between the beginning of May and end of June.  It will be a long delay if I get sick. 

So you can see for yourselves, here is one of the most recent photos that we sent to Dr. Bauer, to which he replied, "his back looks terrific."  Everything is coming along great, and you can see what an art Dr. Bauer's work really is.  We are so grateful that he was brought into our lives.  Thank you all for keeping up with us and remembering me in your thoughts.  Stay tuned, for there is much more to come...