Zachary James

Zachary James

Sunday, December 28, 2014

Back to Back

Another year over and a new one about to begin, but some things remain the same.  We will be revisiting Chicago for Zac's 13th surgery and his 7th round of tissue expansion.  13 is a number I can barely bare to utter when it comes to surgeries; 2015 is not a year I ever imagined we would still be having surgeries to remove his Giant Congenital Nevus.  Regrets?  Not one.  But I would be lying to you if I said that my emotions weren't as fragile as the beautiful Christmas ornaments I am about to pack away for another year.  In fact, as I pack away decorations and simultaneously pull down surgical supplies to take inventory, the reality of this next surgery becomes the anti-Christmas. 

Zac is now 4 1/2 years old.  On January 6th, it will be 4 years since his first surgery to insert expanders into his 'normal' skin and remove the Giant Congenital Nevus - a large birthmark - that covered over 3/4 of his core.  I never thought we would still be having surgeries.  Probably because having each surgery takes so much emotion, strength, and stamina that it is just too much to look ahead to the next.  Zac does not heal as well as he did as an infant so the 3 months expanders/ 4 months rest / repeat merry-go-round is not predictable.  Infections, stitches and areas of irritation make it impossible to foresee the outcome of each round of expansion.

I accept that this is the journey we have chosen and without accepting it, I would've missed so many wonderful things.  The incredible friends who support me, the bravery in Zac's heart, and the ability to persevere and put my faith in His hands, have all been blessings that have changed my life.  Though even with these blessings - I needed to take a break from writing this blog this past year.  I apologize to my friends and family who I know looked forward to reading to check back with Zac and keep up to date with his progress.  I also apologize if this post sounds a bit somber.

I have realized more in these past 6 months how right the decision to have these removal surgeries was.  Waiting until he was older would've only lost valuable time.  As Zac is now 4 and very vocal, here is what I now know for sure, yet only suspected previously.  Nevus skin is itchy.  It is not unusual for Zac to wake up with pajamas dotted with blood from where he has scratched so violently he has torn his skin.  Zac does not sweat like you and I and has proved very sensitive to our Arizona weather.  He constantly craves cold from touching his outside wall at night to asking for his quilt which he calls his 'cold blanket'.  He will tell you he hates to be hot and is always asking me to turn on the cold air in the car.  Kind of makes me wonder if this is the right climate for him.

While he may start to remember these surgeries, I bet he has very little recollection of the 12 others he has had which also makes me so happy I started early.  Please pray for my little guy who now grasps the reality of what happens when we go to Chicago.  It is so much more difficult on my heart to hear him say he doesn't want to go.  Pray for His hands to guide Dr. Bauer in surgery and that we have a smooth and quick recovery and a successful round of expansion.  And of course for safe travels as we get ready to make our 13 trip on our own, just the two of us, into some miserable weather.