Zachary James

Zachary James

Wednesday, November 7, 2012

Double Trouble for the Bubble

Just when I had excepted the 'hole' situation and had it under control...the other shoe dropped...  One night Bruce and I noticed that the back of Zac's shirt was a little wasn't blood but we lifted his shirt to make an assessment.  It looked like the scab on the incision line was a little wet.  Nevertheless, the incision was not red or irritated so we just let Dr. Bauer's office know.  In less than two days, the incision had opened up! In less than 24 hours after it opened, it was the size of the first hole (bigger than a quarter) and just 12 hours after don't even want to know!

The size of the hole on Saturday night
The size of the hole by Monday
I sat on the bathroom floor just staring at the gigantic hole in my son's back wondering how on Earth I was going to get through this.  For the first time I can remember in all my rounds of expansion I was in a major panic. I was praying so hard that I wouldn't need to handle the tissue expander falling out on my own, I was worried that the 'good' skin around it would now be scarred and unusable, I was just without words. I contacted Dr. Bauer and he told us to pack our bags.

On Saturday night when most families were at Halloween parties - I was on-line trying to navigate plane fares and travel arrangements.  While Dr. B said Tuesday or Thursday would be best for surgery...there was no way financially to get there on Monday for a Tuesday surgery so we booked tickets to fly out on Wednesday, hoping for a Thursday surgery.  We didn't have a 'scheduled' surgery yet.  We were at the mercy of possible cancellations of other patients due to illness and the storm on the east coast but Dr. Bauer's office assured me there would be a surgery. I quickly packed our things...thank goodness I had never really had a chance to completely UNpack from Utah - we were going to need a lot of those warm clothes. All the things we typically have weeks to prepare for were all happening at once.

Wednesday morning I had a call from Dr. Bauer's office...they wouldn't be able to get him in to surgery until Friday but assured me that the skin would stay intact and that everything would be okay even if the expander fell out...this was going to be the scariest Halloween ever!  We boarded the plane - Zac was so crabby, not wanting to walk at all.  He kept telling me he wanted his bubbles out.  We arrived at the Milwaukee airport (which by the way is much more affordable than flying into Chicago and almost equal distance with a much nicer drive).  We got into our rental car and started the drive to the hotel when I noticed we just might make it to Dr. Bauer's office before they closed!!!  I called Mim and told her how close I was going to cut it and she told me to come on in.  I was SO relieved!!

All ready for Trick or Treating
We arrived at Dr. Bauer's office at 5:10 and Dr. Bauer and Mim were waiting for us.  Dr. Bauer had the expander out in just minutes causing Zac only a little discomfort and  giving me the greatest relief ever.  It really truly was just as easy as as they had all said.  Tissue expander pops out....clip the line to the port, dress the wound.  Amazing...and Amen!  Zac and I were able to celebrate a little bit of Halloween when we stopped at the local mall to eat dinner though the biggest 'treat' was having his bubble out. Zac was in better spirits but still not himself - where was my Captain Happy?

Thursday was a day of anticipation - waiting for surgery on Friday.  I promised Zac a train ride so we went to Gurnee Mills to ride their little train but nothing seemed to cheer this little guy up.  He even threw a couple of major fits which is totally unlike him.  Thursday couldn't come quick enough.  We spent the rest of the day cooped up in the hotel - Zac happily playing with his trains until we got the call for our surgery time and then it at 1:30 be there at food after mid-night.  This was starting to become very familiar...
Captain Not-so-Happy riding the train.

Tuesday, October 16, 2012

Holey Holey Holey

Little Boy Blue
After a successful trip to Chicago, we got home and we do what we always do.....wait for the other shoe to drop.  Now, anyone who knows me knows that I am a pretty positive person so by waiting for the other shoe to drop, I don't mean to sound's just reality and it's better to be prepared for it than not.  We had had a very high and low week as a family.  Bruce and I celebrated our 10th anniversary the day before Bruce's dad, Gene passed away at 77.  So emotions were running high in the Moller household.

Three weeks into Round 4, after just two expansions and a constant watch on a wound Zac had gotten on his skin over one of the expanders -  Zac developed his trademark fever.  When his temp reached 103 one night, Bruce and I just looked at each other with that all knowing glance that a mother and father have between them and knew that Zac would need some hefty antibiotics and we would be seeing the inside of a hospital soon, spending a night (if not more) on plastic beds and pillows, separated - he home with Zoie and me comforting Zac through the night as a steady stream of nurses and CNAs interrupt his sleep all night.

Well, we weren't entirely wrong...  Upon visiting our new pediatrician, we did find Zac's fever to be high and his WBC count to also be high.  He also didn't like the way that Zac's wound looked.  But instead of rushing us to the hospital, he decided to administer a 24 hour antibiotic in the office.  It wasn't fun - blood draws and shots never are for our little ones, but when all was done, we were able to go home and rest in our own beds.  Upon returning to the pediatrician the next day, he agreed that Zac looked better but his WBC was still high which puzzled him.  So we called Dr. Bauer on his cell phone.  He explained to both Dr. Mitra and myself what steps to take, assuring Dr. Mitra that Zac did not need to be hospitalized and that we did  not need to do anything additional to the wound.  We were prescribed a 10-day antibiotic to administer at home.

Dr. Bauer instructed me to keep the wound clean and covered by either Tegaderm or Duoderm which are both basically heavy duty band-aids.  The Duoderm is to give the wound stability and keep it from growing.  The wound was draining quite a bit which is pretty gross so we have to put a fair amount of gauze over the bandage and bodice netting - which Zac calls his sexy shirt - over the trunk of his body to hold the gauze in place.  The wound also seems to be getting bigger.  While gravity is on our side because the wound is on the top of the back so the expander is not weighing heavy on it trying to push it open, expansion on this tissue expander is done, finished....out of the game, just like that.  :(

We traveled to Utah for the weekend to celebrate Bruce's dad's life.  It was beautiful!  All the Fall colors in full swing.  The kids had a great time playing outside with their cousins; Zoie digging up worms and Zac scooting along on a tricycle...back and forth, back and forth.  We got to see rivers and mountains and even the Salt Lake City Mormon Temple!  We traveled with all the necessary medical necessities.
Fishing in the River
Big toothless smile

Me, Zoie & Gramma at the Temple
When changing the Duoderm over the weekend, I noticed a little raised part at the top of the wound...upon closer my horror I knew exactly what it was.  The very tip of the expander was getting ready to poke through the hole.  Did I freak out??  No...not really.  Well...maybe a little but it was a silent freak out.  Only my Gramma and husband could really tell.  The diagnosis...keep the hole covered and pray the expander doesn't fall out.  Seriously friends...that's it.  

So, I begin my 7 week prayer to keep the hole from expanding because 1) I know there's nothing I can do except what I am already doing  2) If anyone can keep that thing in place...He can and  3) It's the only thing that's going to keep me from going completely mental.   

My 7 Week Prayer
"God, I love you. I don’t love this situation. But I love you. Therefore, I have everything I need to keep putting one foot in front of the other and walk through until I get to the other side of this.” 
Thank you Lysa TerKeurst via my friend Denise

The good news is we still have two other expanders to fill and in the words of Meatloaf...
"Two outta three ain't bad"...

***************************WARNING PICTURE BELOW*****************************

You can see the clear expander coming out of the hole, the tip on the top left.  On the right is a remnant of Duoderm.

Wednesday, September 26, 2012

Pancakes and Small Acts of Kindness

It's rush hour, you are late...maybe you are on your way to work...maybe you just chose a really bad time to schedule a doctor's appointment but whatever it may be, you ended up here...stuck.  And to top it off, the lady next to you has her blinker on and thinks she's actually going to 'cut' in front of you!!  Consider for just one second that maybe this woman reaaallllyyy needs to get over - who knows what is going on with her day. are at a fork in the road.  The fact is you are probably not the only one with issues And IF you let this lady will never know how much it affected her life.  But you can go on about your day feeling like a good person.  Just a simple act of kindness can change someone's entire well as the lack of.

Staying at the Ronald McDonald House really had a profound affect on me.  As much as I gloss over it...being alone with a two-year old is tough.  Not just because two year-olds are A LOT of work but because you can't exactly carry on a conversation with one.  Though I can appreciate having many 2 minute talks with Zac about cars, trains or Bubble Guppies and he makes a darn good shopping partner ("Oh mommy, those shoes are cute..."), it is not the same as having a supportive adult with you.  A phone call is nice, but it doesn't take the place of a face-to-face conversation.  

The first night we spent at RMH after surgery was rough.  Even if Zac wasn't waking up on his own, I had to wake him every 4 hours or so to ensure I stayed on top of the pain medication.  In order to get him to take his medication, I had to resort to giving him 'jam beans'...what you and I know as jelly beans...   Sometimes the pain was so overwhelming that he would hit at his face and scream.  This particular night, I had a hard time getting him settled down despite trying a few different things.  Out of desperation, I asked him if he wanted to get in his stroller and he said yes.  I put the seat all the way back (a feature I had specifically chosen when making a Chicago-trip stroller purchase) and laid him inside, covered him with his favorite Elmo blanket - handed down by his sissy and slowly pushed the stroller back and forth until he fell asleep.  Though he slept restless, he slept rather soundly in his stroller from 2:30 a.m. until he woke up at 8:30 a.m.  

All in all, it was a very rough night.  I got dressed and changed Zac's clothes and diaper (which was no small feat thanks to the port in his hip/leg for the front expander - oh how I absolutely dreaded diaper changes this trip),I  pulled the blue jelly bean out of his hair from the previous night's medication bribery and I walked downstairs looking to find a bagel and some cream cheese donated by one of many amazing groups that volunteer their time and cooking skills and instead walked into something that would change my day.  A man greeted us right away.  He squatted down to talk to Zac, who was eating a bag of Goldfish crackers and something magical happened....Zac smiled!  To be honest, Zac smiles A LOT...really.  He is the sweetest little guy, but something about this first smile after such a long night.  A smile that I was unable to muster up all morning, bright and glowing and then came the small giggles. 
Care Bear pancakes!

It brought me to tears, really.  I do not cry easily but there was something about this moment that made me feel...I don't even know...relief, tenderness.  I shed a tear or so and then was quick to dry them away as I didn't want to be seen by anyone. ;)  I was so touched by the kindness of these strangers and suddenly the simple yogurt I choose to eat from their vast feast was a little more special because it was given with such kindness.  We choose a seat in the huge RMH dining room and that is where my day began to change.  One of the volunteers came over and sat at our table and we started to talk.  We talked about nothing in fact, I can sparsely remember what we talked about.  I only know that during our talk, all I could think about was how nice it was to have some 'adult' company.  How the kindness of these strangers -in particular the one that gave me the best gift ever, the one thing I didn't even know I really needed, the gift of conversation...friendship - brightened my whole day!!  I have no idea if this man even knew how much he changed my day...

So, in the words of one of my mentors...go change someone's world today.  It may be done with something as simple as a kind word or even a smile.  You may not realize you did it...but someone else will be glad you did.  "A new command I give you:  Love one another.  As I have loved you, so you must love one another.  By this everyone will know that you are my disciples if you love one another." John 13: 34-35  

Sunday, September 23, 2012

Lucky Number 7

Captain Happy!

Have you ever wondered why the number 7 is considered lucky?  Seven has always been my favorite number.  There are 7 days in a week, 7 notes on a musical scale, we have 7 holes in our head...and I cannot believe it, but Zac just had his 7th surgery!!!  As I sat in the airport, travel mother extraordinaire with my condensed new under the seat carry-on and and rolling carseat bag with Zac attached to his favorite monkey  leash...uh, er...backpack I thought to myself, "How did I get here?"  How did I all of the sudden go from novice tissue expanding mother to 'ask me anything about tissue expansion,  melanocytic nevus and/or the city of Chicago.'  And now that I am no longer a novice...what does that make me?  An expert?  Surely not.  The one thing I know for sure is that no two rounds of expansion are EVER a like and you can take that to the bank, therefore, you can never call yourself an expert.

When people ask me how I can be so calm before a surgery, I tell them one thing.  I simply try really, really hard not to think about it until I actually have to pack my bag to leave (which is usually a day or two before). Gone are the days when I used careful preparation in my packing.  Now, I keep the important things packed in the same place such as pain medication and seasonal clothing.  This time, I was forced to think about our adventure a little earlier when Zac developed an infection in two of the 7 holes in his head (that would be his ears...).  So, I will admit, I was very stressed out trying to keep him well.  After all, the only thing worse than traveling to Chicago for your 2 y/o son's major surgery is making all the plans to go....scheduling the surgery, the plane tickets, rental car and accommodations only to have to cancel everything.  Lucky for us...Zac's ear infection healed up very nicely and on September 12th...we were on our way to Chicago for surgery number 7 and the beginning of round four of tissue expansion.  Yep...just me and Zac.  The plan this time, THREE expanders and an excision of a satellite on the back of his thigh about 1.5" in diameter.
Having some breakfast at the airport

Our luck began as we got out of the car at the airport only to notice that my little car seat wheelie thing was missing a strap!!  Lucky for me...I had found a car seat bag with wheels on major clearance at Target a few weeks prior, so after a small rearrangement, we were ready to go.  With plenty of time to spare, Zac and I had a super nutritious breakfast at the airport Starbucks.  Zac was loving running around at the airport on his leash...uh, er...monkey backpack.  We arrived in Chicago, got our bags and our rental car.  This time though, Zac an I were in for a new adventure.  We were staying at the Ronald McDonald House near Lurie's Children's Hospital in downtown Chicago!  I got out my Google Map and off we went.  
Waiting for our luggage

To be able to stay at the Ronald McDonald House was very lucky indeed.  In order to stay at a RMH, you have to meet certain criteria, you also have to call no more than 24 hours in advance to see if they have room availability for you.  Thus the reason we've never stayed there before.  It is stressful enough to do all the planning without leaving your accommodations so up in the air.  There is also the fact that RMH is in downtown Chicago....Highland Park Hospital and Dr. Bauer's office is a good drive into the suburbs from any RMH.  But if you know me....I love change and trying new things and this, my friends, was a welcome change.  The toughest part about RMH was having to find the house, drop off your luggage, park your car 4 blocks away in the hospital parking garage and walk back to the house.  But, the weather was beautiful and I wasn't afraid of a nice little walk.
Top floor view of RMH
Occupied by the iPad before surgery

Zac's surgery was scheduled for 9:30 a.m. on Thursday, Sept. 13th which meant we needed to be there by 8 a.m.  I was ecstatic not to have to deal with an afternoon surgery and was hoping it would be easier on Zac than the last surgery I attempted by myself.  Then it know those days when EVERYTHING goes wrong??  This was NOT one of those days!  Is it possible for the day of surgery to be...lucky?  We left the RMH at 6 a.m. to arrive in Highland Park by 8 a.m.  Yes, you read that right.  Remember...I had to get to the hospital parking garage (which they also have a shuttle to) and get my car, then there is that little problem of rush hour traffic...yes, even though we were headed away from Chicago.  I hooked the iPad up to the back of the car seat for Zac and I was relieved that my Google instructions took me right to the freeway without a problem.  Lots of stop and go traffic later (mostly stop and not go) and 3 episodes of Bubble Guppies and we arrived at the hospital with 15 minutes to spare.
Loving the playroom at RMH

At the hospital, we followed the same drill as always...check in at the desk...take elevator 6 to the 2nd floor and head to the surgery waiting room for a vital sign check.  The anesthesiologist comes in to check on Zac, introduce himself and ask a bunch of questions, a short check in with Dr. Bauer and then we wait...  After several trips around the hallway in the wagon and a few games on the iPad, it was time to take a walk down the next hallway and wait to be taken in to surgery.  There we see a sea of familiar faces, including Oni, our favorite recovery nurse.  Zac is taken back to surgery in the arms of one of the fantastic nurses, wrapped in a  warm blanket with his favorite car, a Tow Mater that talks.  And I can't help but cry...yep.  Even with six other surgeries under my belt, this part gets me every time.   

Oni came out to talk to me and gave me a coupon for the cafeteria and told me to get something to eat.  I was dreading the average hospital food when I walked into the cafeteria but wouldn't you know they have a specialty chef on-site making crepes!!!  ARE YOU KIDDING ME?  Crepes!  YUM!!!  I looked up and just said a hallelujah and thank you to God for giving me such a lucky day!  Though, I know it wasn't really luck as much as it was the Lord.  This was a day when the small blessings were magnified greatly.

I was expecting about 1 1/2 hours for surgery.  Dr. B came out and gave the the lowdown on the expanders...a 250cc expander in the shoulder with 60cc so far and two 750cc expanders - one in the front with 90cc and one in the back with 80cc.  A mostly full excision of the satellite on the back of the right thigh. Dr. B recommends staying overnight in the hospital for 'pain management'...ugh.  So, I headed back to recovery to hold my little guy.  Once we got to our room, Zac presented a pretty decent little appetite feasting on goldfish crackers.  He even ate a fair dinner.  We got through the night quite well despite the normal interruptions.  When Zac woke up at 5 a.m. and asked for 'some turkey' I knew we were going to be ok.  

Couldn't resist this shirt w. attached cape

After falling back to sleep, we woke up to a visiting Dr. B.  As Dr. B looked under Zac's bandages, Zac looked up at him and said, "I brought my cars...and my my backpack."  I know this completely melted Dr. B's heart because when we visited Mim at the office later that afternoon, she had already heard the story.  The recovery was not fun, I am not going to lie.  The older the kids get, the rougher it is on them.  Despite doing all I could to manage Zac's pain, he didn't want anything to do with getting out of bed or out of the stroller for days.  Changing diapers was especially difficult due to a port placed in his hip to the front expander.  Everytime I had to bend Zac's leg in the slightest he would scream and of those cries that had him partly holding his breath.  We spent a lot of time in the stroller post-op.  It was great to be downtown as there were plenty of places to walk to and check out while Zac chilled in his stroller.

Though God created the Heavens and the Earth in 7 is going to take a few more surgeries to finish what we have started here.  But as for the 7th will go down in my book as lucky #7!

Wednesday, September 5, 2012

Back to Business...

I know I haven't written in so long that most of you have been longing for an update...  Truth is, when we are resting from expansion, I just don't want to think about it much.  I am not inspired to write anything amazing and wise because I am off enjoying our normal life without thinking about germs, drains, fills and pretty new skin.  It's been a great four months and a very nice break but next week we are back to Chicago for our 4th Round of tissue expansion!

Seems like just yesterday I was getting ready for the first trip to Chicago, knowing in my heart I was making the right decision for my son yet still scared to death.  Putting on a brave face for my daughter so that she wouldn't worry and leaning on my husband for comfort.  Now however, I am one of the 'experienced' mamas!  I have tips and suggestions and trial & error advice galore which I am looking so forward to sharing with you in the weeks to come.

Right now, we need some prayers.  One week from tonight, I will be sitting in a hotel room at this time, probably unable to sleep...maybe even writing on this blog....  Dreading taking Zac into surgery by myself in the morning.  What could be worse??  The whole surgery being cancelled due to an ear infection dagummit!  So much planning goes into laying out the whole surgery process that it is heartbreaking to think about calling off the entire thing when unexpected things happen.   I took Zac into the doctor last Wednesday because he had a 103 fever.  They gave him antibiotics for a double ear infection.  Our pre-operative physical has now been postponed to Monday...just two days before we are supposed to leave for Chicago.  I am praying for a healthy little boy so we can get back to business!  Thanks everyone!!

Picture by Jerri Parness

Saturday, June 9, 2012

Owee, Ouch and Oh Brother...

Wow, it's been a long time since I have had time to do an update and I do apologize for those of you who check back often, I know you are probably just dying to see the progress of the last surgery!  I will give you a quick re-cap of what we have experienced since returning to Arizona.

  • Week 1 - Zac seemed to have the sniffles.  Nothing serious, just not himself.  This round we definitely heard A LOT more "owee...ouch....Mama, hurts..."  Nearly broke my heart on several occasions.  And looking at the raw stitches...ouch...
  • Week 2 - NIGHT TERRORS!!  Just when I think I've experience just about every after effect of surgery...then came the sleepless nights.  Evidently, post-anesthesia can bring on night terrors...?  Zac started waking up about an hour after I put him to sleep, screaming...I would go in, pull him out of bed, rock him and then lay him back down only to experience the same thing within a half an hour to an hour.  This went on ALL NIGHT folks...seriously.  For about 4 nights.  It was worse than having a new born and I don't even know how on earth I made it through an entire day at work after such a series of sleepless nights.  Then we figured out that Zac was actually sleeping through these 'nightmares'.  I read up on night terrors and all advice pointed to letting the sleeper basically work through their terror.  Make sure they are in a safe environment, the article said (crib...check)  and don't wake them.  The night terrors started to trickle off...not sure if it was on their own or from the dietary supplement that I started giving to Zac....  That was rough...
  • Week 3 - Zac gets an amazing gift from some incredible people.  A beautiful quilt handmade with love by the Daisy Mountain Quilters!  It is beautiful and he loves it!!  Thank you so much!!!!!
  • Later Week 3 - Anticipating getting Zac's stitches out and decide to go ahead and use anesthesia because of the amount of stitches...which is well...a whole lot this time...  Zac starts crying in the middle of the night.  Rounding the corner of his room, I smell puke...oh yeay...hope it didn't hit the quilt...LOL (and it didn't, amazing really..).  Had to reschedule the removal of his stitches due to a stomach virus but at least no one else got it (well...yet anyway) and we were able to stop wrapping him in the dreaded ACE wrap that he has to wear for 3 weeks post-op.  That is NOT fun in the AZ heat.  Zac is now requesting 'cream' daily.  Mama...cream...he says and lifts his shirt.  For any of you mom's that have tried everything to stop itching and exema and help with healing and scarring....I am going to talk about this cream later.  It is amazing but I don't want to ruin the flow of this story ;)
  • Last Monday, we were able to have Zac's stitches taken out at Phoenix Children's Hospital by Dr. Harper Price and RN Kellie Badger.  Although the day was long for Zac because he couldn't eat essentially all day because of the anesthesia - he fell asleep in my arms shortly before going in to have the stitches taken out.  As I mentioned before.  Due to the amount of stitches he had, we agreed that it would reduce the stress on Zac if he was put under before taking the stitches out.  It went very smoothly.  When we got home though....that boy was an eating machine!!  He ate a half-turkey sandwich, a few pieces of watermelon, fish crackers, a whole PBJ sandwich and an hour later asked for Spaghetti-O's with meatballs!!  

So there is a complete recap...more or less...I probably even saved some grueling details by waiting so long to do a post. haha.  Here are the latest results.  For all my fellow moms....I want you to know that I purposely waited a while to post 'after' pictures.  Fresh stitching is never fun for anyone to look at and this time it was a little much for even me.  God is Great!  He gave us Dr. B!  And a whole lot of people who love us.  And can still purchase a cookbook to support Zac!  What a great father's day gift that would be!!  Some of my hubby's best recipes are in there.

Wednesday, May 9, 2012

Feelin' Bubbly we are again.  Tomorrow Zac will have his third round of tissue expanders removed!!  I feel so fortunate to have my entire family with me this time.  Traveling alone with Zac is not fun...actually, traveling with Zac and the entire family is not fun either LOL.  We landed at Chicago Midway this afternoon and for the first time, I felt an overwhelming feeling of familiarity.  Not the kind of familiarity that says "I'm home!"...more like the kind of familiarity that says "ugh...this place again..."  No disrespect to Chicago...I am sure it's a great city, if you are visiting for any other reason in the world.  I mean, there is a TON of stuff to do...if you are up to it...and sadly, due to Zac's condition - we usually are not.

I was pretty proud of myself today - introducing Bruce to my normal Chicago routine....get off the plane, roll Zac and carry-on luggage to baggage claim, schlepp luggage to the rental car (sometimes by shuttle...ugh), drive to hotel area, eat at Portillo's (baked spaghetti...YUM!!), pick-up necessary long-term items at Target - head to the hotel for the night.  I can't believe I've been here enough times to actually establish a routine.  It seems just like yesterday that I was the 'new' mom to all of this and I was meeting Beth Nagel and her son Sully for the first time...Beth seemed like a pro to me and I was in awe of how open and fabulous she was, I longed for her radiant glow as she talked about Sully and the progress they had am a pro!  LOL  Okay, okay, well, no one is ever a pro at this matter how much practice you have, there's always a little zinger that gets thrown in.  I just hope I can pay Beth's kindness forward and someday be the mentor for someone else that she has been to all of us.  We love you Beth!
Showing his muscles and 845cc in his front expander!

845cc front; 765cc back

Zac is up for the 2nd surgery on Dr. Bruce Bauer's schedule tomorrow - expecting us at Highland Park Hospital at 8 a.m.  Zac currently has 845cc of saline in the front tissue expander and 765cc in the back tissue expander!  This is the first time that Zac has ever had more than one expander and although I am not excited about going to the hospital tomorrow...I am highly anticipating the results.  Zac was in amazing spirits today though a little crabby from the plane.  We played the Gummy Bear Song, one of his favorites on YouTube, over and over tonight until he started to yawn.  Tomorrow I will be arming myself with lots of cars and lots of Elmo and Chuggington on the iPad.  I pray that he can stay in good spirits once we arrive at the hospital.

Please pray for my little guy tomorrow - prayers for a successful surgery and a fantastic recovery with little discomfort.  Pray for Dr. B as he touches four children tomorrow and changes each of their lives in an amazing way - I pray that God will guide his hands over our children for phenomenal results.  Good night all!  Thank you for your prayers, positive thoughts and support.  If it weren't for you who have supported us with the cookbook and our fundraising efforts, I would be here alone with Zac and tomorrow would be much more difficult for all of us.  In His Name - Amie

Wednesday, May 2, 2012

The 700 Club!

Well...we have made it....9 weeks in and Zac is a member of the 700 Club - 785cc in the front expander and 705 cc in the back expander!  During this past fill, the front port wasn't numb yet...eek.  Zac cried a little but kept still so we could finish.  And look at the happy look on his face right after this week's fill!  What an incredible little guy!  He is my hero!!!                                                                      

We had a busy weekend with lots of birthday celebration.  We went out to dinner for Zac & Zoie's birthday last night (yes...born on the same day...four years and 1 hour apart for those of you who don't already know).  Zac loved drinking from the bowl of salsa...and Zoie enjoyed the company of her best friend, Dani.  Watching Zac and Zoie sit side by side and blow out candles - Zac with his Lightening McQueen candle and Zoie with her giant sombrero it made me think of my brother.  I know that Zac & Zoie have a special guardian angel.  Next week we head back to Chicago.  Whew...these 10 weeks went quick!!  Please pray for us for safe travels and a successful surgery.  It really helps to know that Zac is in the best hands with Dr. B.  Last night I came home to an email from Dr. Bauer saying that Zac looked 'fantastic' and 'Happy Birthday'!  Thank you God helping us find Dr. Bauer - he is amazing!

For those of you who don't know, we were lucky enough to have a wonderful story written about us in Images Magazine.  If you haven't read it...check it out, not only is it fantastically written by an amazing journalist with her own amazing personal stories - Amanda Christmann Larson but it also features some terrific pictures by a photographer named Jerri Parness - Zac was absolutely in love with her and she had him walking hand-in-hand with her during the entire photo shoot.   Thank you ladies for painting our story so incredibly and thank you Images Magazine for letting us share our story!

Monday, April 23, 2012

A God-Shaped Hole

Captain Happy right after tonight's expansion!!

I can hardly believe there are only a little over two weeks left in this round before we head back to Chicago to have Zac's two tissue expanders removed.  After our 3 night stay in the hospital battling an infection - the rest of our expansion has been relatively uneventful - the best kind of expansion you can ask for.  The front expander has been a total champ, with just under 700cc in it; the back expander, the biggest one - not so much - we are at 625cc. despite a good head start at the beginning.  For some reason, the back tissue expander had been tighter and less willing to soften up.

Typically, the stitches that exist where the tissue expanders are placed usually are not removed until the expanders themselves are removed.  On occasion, they become red and irritated which requires their removal but we've been lucky the past two rounds to never have had any issues.  Yep you have probably guessed what I am going to say next...until now....  

A couple of weeks ago Zac developed a spot on his back incision that looked a little...well, icky.  After using a fabulous lotion I found, it started to heal and scab over quite quickly which I was very excited about.  UNTIL, after sending pictures to Dr. Bauer's nurses one Friday they suggested that they were a little concerned about what was underneath the scab.  They asked if I could take the stitches out and...oh yeah, if I could just peel back the scab so that I could see what it was like underneath!!!  Uh, yeah...I got right on that...

I waited for the close of the weekend and put Zac in the tub, I continued to wet the scab until it came off.  To my surprise, as I hoped, it looked fine. :)   The next day, we proceeded with our expansion, taking care tread lightly with the back expander as to not cause damage to the stitching.  After filling the back expander, I took a look at the incision and noticed that the part that was scabbed over looked a little...icky again.  Think cigarette burn, about the same side and a little raw.  As I started to clip a few of the stitches, Zac became very uncomfortable, despite that area being numbed.  As I looked at the area again, I got a little bit freaked out.  Ok, I got a lot freaked out.  Not because it looked super-horrible, but because I could already envision the gaping hole I was sure it would turn out to be.

I mentally placed myself on an emergency plane back to Chicago in an attempt to get there before the whole darn thing fell out!!  And in this moment...I did what I almost always do when I freak out.  I called my nevus-mommy support group.  Merilee calmly talked me off the ledge and assured me that everything would be better tomorrow.  Zac was pretty uncomfortable that night as he had started to get in the past several weeks as his expanders have grown.  He woke several times and in the morning, I was still in a little bit of a frenzy.  I had another small breakdown as I emailed pictures to Dr. Bauer and his nurses the next morning from work and waited for his response.  It was after I heard from Dr. Bauer, who assured me that the scabbing looked superficial, that I realized that the one who had the hole was me and I needed to fill it with gratitude.

I am so absolutely thankful for so many things.  We have had a smooth expansion (thus far)and friends and loved ones who support us. We are blessed with doctors who truly understand Zac's skin disorder and are knowledgeable and educated on how to treat it (it may seem like a simple thing but such doctors are an extremely rare find).  We live in a wonderful community (Anthem) who is both caring and supportive and has reached out to us with the most amazing support.  We have the most loving church family anyone could ever possibly ask for.  Most of all, He has given us all of these blessings and more.  If you have a hole - try having an attitude of gratitude, it really puts things into perspective.  There is so much to be grateful for.


Last week's irritated stitches

Thursday, March 22, 2012

When It Rains...It Hails...

It's been a roller coaster ride since we got home from Chicago....but isn't it always during expansion.  So...last week, we finished Zac's first fill.  A very good one too...80cc in the front tissue expander; 90cc in the back expander.  I put Zac into bed ending a great day.  He was happy, ate well, seemed very normal.  At about 10:30, he woke up crying and I went in to comfort him.  I always get a little freaked out when he cries at night or expresses any discomfort during expansion.  I rocked him back to sleep, checking him for signs of a fever....nothing.  At 3:30 I woke up to the sound of Zac crying and calling for me, this time when I went in to get him he was very warm.  His temp registered 102 degrees so I gave him some Tylenol and tried to comfort him.  He was very, very uncomfortable and a little hard to console.  I already knew what the outcome of this fever would be because we've been in the hospital with each round of expansion.  I was mentally packing my bag for the hospital.  The next day, two horrible requests for Elmo...or cars...uh oh...  All he wanted to do was lay on his tummy with his little feet tucked up underneath him.

We went to visit our pediatrician who did a blood draw and a throat swab because his throat looked irritated.    Strep throat...positive....white blood cell count stay...positive.  So we checked in at John C. Lincoln that afternoon and expected to stay the night.  What we didn't stay THREE NIGHTS!!!  Jeesh!  We don't even stay in the hospital that long with our surgeries!
Day 1 - First sign of feeling better...surrounded by cars in the JCL playroom

Day 2 - Get me outta here or Elmo gets it!

Day 3 - What bed hair looks like after 3 nights in a hospital bed
Night one - Zac's fever just wouldn't budge.  Night two - another fever and a spiked temp in the afternoon.  I got a little freaked out then...I mean, I expected one night, but three.  On the second day, they changed Zac from an IV antibiotic to an oral one because his IV would get kinked if he moved in the slightest.  The nurse and/or aide would have to stand and hold his arm for 30 minutes while the IV finished up.  Night three - finally, no fever!  After three nights, we were itching to go...3 nights of plastic beds & pillows, constant streaming light through the door and nightly interruptions from nurses and aides.  This hospital doesn't serve food to parents and I didn't want to leave Zac's side for a second because I didn't want to give him any additional stress.  Thank goodness to good friends who came to my rescue (as Bruce was now home sick...) and brought me food and coffee and even some goodies for Zac including a handwritten book with pictures by Angelina, my friend Lisa's daughter - so adorable!!

On the last morning at the hospital, I was able to take Zac outside and we sat and watched cars for a bit..."bye bye truck"..."bye bye car" he would say.  My little guy is getting so big.  Things change in the blink of an eye...  On Saturday, it was in the mid-70's; On Sunday, 40 degrees!  Pea-sized hail fell hard in our backyard, turning our patio furniture an arctic white.  As the hail was falling, Zoie and I stood at the window and watched.  I looked at her and jokingly said, "You want to go out and make snow cones?"  Enthusiastically, she said, "Yes!!"  I laughed and told her I was joking and that although it would be fun, it wasn't a good idea for us to run out into the hail like we do the rain, because the little icy pieces would really hurt as they pelted us.  Funny thing is...she still wanted to do it.  Guess sometimes the pain is worth the joy :)

Friday, March 9, 2012

Ding ding ding...Round 3!

Resting in the hotel room.
I can hardly believe it has been 9 days since Zac's surgery.  We spent the night in the hospital since Zac's surgery was so late in the day and were released the following day before noon...right before a flurry of snow hit.  Zac was definitely more vocal about his level of pain this time and it was the first time I alternated Tylenol with Codeine and Motrin...usually regular Tylenol and Motrin are good enough.  I also woke him in the middle of the night to keep his doses up to keep his level of pain in check.  It was the first time he didn't bounce back right away.  Zac had two expanders placed.  A 750cc expander in the upper chest and a 1000cc tissue expander placed on the left side/back.  He had the remainder of two leg satellites removed and had a skin-tag type thing removed from his right ear.   Friday we just spent in the hotel room watching Elmo on repeat.  I got a text from Bruce that said...uh oh...and had a picture of Zoie....missing her front bottom tooth!!  Ugh!  Can't believe I missed that!  Oh well, guess the tooth fairy is bound to come a bunch more in the future...
Loving the Elmo DVD in the van
I have to tell you the amazing story that happened the day we arrived in Chicago.  I got to the Alamo car rental area ready to pick up my full-size car.  I was a little nervous, wishing I would've not been so cheap and gotten a small SUV instead because I was very uneasy about driving in snow.  Ok, uneasy is an understatement...I was freaked out!  When we were in Chicago last January, I made Merilee and my husband drive everywhere so I did not consider myself experienced in driving in that fluffy,
slippery stuff.  Anyhoo, upon exiting the shuttle at Alamo, I was informed they did not have my car available and would I like a mini-van.  WHAT!!  Uh...YEAH...I would LOVE a mini-van!!!  Seriously friends, three years ago I never would've dreamed those words would come out of my mouth but the thought of the comfort of something familiar in this VERY different place totally took over.

Randy, my Alamo angel drove over a beautiful mini-van.  It had gorgeous black leather seats with white stitching, automatic get the picture.  I was SO happy!  I told Randy how much I appreciated it.  I told  him I wanted him to know that my son was here to have surgery...and on my birthday none-the-less and that he absolutely made my trip.  Randy replied, "It wasn't me ma'am...this was God's doing.  There's a DVD player back there for when your son gets out of the hospital."  I could hardly believe that I got so lucky!  And a DVD player too!  Wow!  Well, let me tell you.  Randy was 100% right - God must've planned this because there were several times that weekend that the only way Zac was happy was by driving in the car, watching Elmo.  One morning I even drove thru the Starbucks drive-thru and sat in the parking lot just to keep him calm.  Randy & Elmo - two more very special people this week.

We were so happy to be home on Monday evening after a plane ride that seemed to last forever.  Zac is still toting two drains that will come out tomorrow after we do our first fill.  It's going to be a little different filling two expanders this time since we have only ever done one.  I am hoping a slow melt Popsicle and entertainment from his sister will do the trick.  Please pray for us in our attempts tomorrow.

On Wednesday, the Arizona Republic featured a very special story on Zac and his rare skin disorder (Thanks Betty!).  I hope this raises awareness and helps to educate people on Zac's many spots and the reason we choose to pursue removal of his Giant Congenital Nevus.  And if you found our blog from the article...welcome to our journey.  I hope that you will read our past posts and follow our story as it unfolds.

Friday, March 2, 2012's not just for shopping anymore!

We got the call on Wednesday night. Zac was scheduled for a 3 p.m. surgery. He has never had a late surgery before. He's always been up first. A 3 p.m. surgery can eat up until 7:30 a.m. and then after that...nothing but clear liquids until 1 p.m. We had to be at the hospital at 1:45. Unfortunately, the no milk after 7:30 rule definitely tipped Zac off. He knew what was going down and kept saying "Josh..." and "bye-bye". He had a total meltdown and it was all I could do to throw everything I thought I needed for the hospital into a bag and put him in the car. So my friends...what do you do when you have almost 4 hours until you have to be at the hospital and you have to keep your child's mind off of food. You do what any quick-thinking woman would head to Target. Yep...that's right. Target, the third happiest place on Earth (after Disneyland and Starbucks of course). I spent over 3 hours in Target, a lot of it in the toy aisle. It worked great to distract Zac and I even filled his prescription while I was there - they really should pay me for this free advertisment LOL.

When it was time to head to the hospital though, the fit started up again. When we got into the hospital room, it was unlike I had ever seen him before. You see, the wonderful thing about doing these surgeries so early is that these little ones won't remember much, if anything at all and usually, they don't have a clue what is happening. The trade off is...instead of getting easier each time, they get a little harder because children become more aware. Zac was screaming for his "jacket" and "hat" because to him that meant we were going bye-bye. The nurses were not shocked since they see this a lot I am sure, they kept asking me if I was okay and all I could think was..."do I have a choice??" Then it happened. I reached that point...that point where you can no longer hold back and I started to cry. I shut my eyes and said a short prayer for strength for me and peace for Zac. And it was answered with some anti-anxiety medication for Zac...and for me...God sent friends.

Just when I thought I reached the breaking point, there were Mim & Susan from Dr. Bauer's office there for nothing else but to give me support. I am sure that Christine had something to do with it because she was amazingly committed to making my birthday special. After Zac (and Tow Mater) went in for surgery. The nurses at pre-op presented me with a birthday brownie and Mim and Susan kept me distracted at the hospital cafeteria with great conversation and a bright pink and yellow box of chocolates. I am so grateful to those two women not only are they amazing medical professionals but they are phenomenal, compassionate ladies and I am so lucky to have them in my corner.

It seemed like only minutes after heading to the surgical waiting room that Dr. Bauer came in to tell me about Zac's surgery. Zac had a small skin tag removed from his right ear, removal of the rest of the two satellites on his left leg and two expanders placed. One expander on the top chest area that will hold 750cc of saline; One expander from the front, left abdomen diagonally across the side up to the shoulder that will hold 1000cc!! The biggest tissue expander we've had yet. We spent the night in the hospital because the surgery was so late in the day and had the same excellent care that I have come to expect from the hospital. While Zac stayed distracted watching Cars 2 and cuddling with Tow Mater and his musical seahorse, he managed to get the rest he needed and stayed comfortable. I even got my birthday cake - a very yummy mini-bunt cake with white frosting, sprinkles and an edible candle - courtesy of The Meltons ;)

We headed back to the hotel, took a nap and woke up to a flurry of snow!! Zac is resting well surrounded by a plethora of cars and watching Cars 2 on the iPad for the 15th time today. Please continue to pray that he has little pain and heals quickly. He is definitely vocalizing the pain more than he did previously...and that hurts mommy too. Thank you everyone for your overwhelming birthday wishes and prayers for Zac - that was the best birthday present ever!!!

I KEEM And Extreme Brain Freeze

Zac LOVES ice cream....or I KEEM as he calls it. There is something so joyful about watching him eat it. A simple pleasure that makes him so happy. Today I spent a wonderful day with my little man. We were able to make it in to see Dr. Bauer first thing in the morning which left us an entire day together. Dr. Bauer is going to do two tissue expanders this time. We have never had more than one... I am happy about that because it means we will produce more 'good' skin...and I am also a nervous wreck...because that means I will have to fill TWO expanders. Well...truth be told...I was a nervous wreck long before the moment Dr. B told me Zac would have two expanders.

Though none of Zac's surgeries have been easy to prepare for. I am not talking about the packing of course, but of the mental olympics that start to occur in your mind about two weeks prior. Don't let him get sick...make sure you get the pre-op physical done...what's it going to be like this time...where will the expanders go...oh my gosh, was that a sneeze?...what will be his reaction to the hospital...will I be able to hold it together... Well, you get the picture. Our two week sprint started with a cold & congestion. Every cough, sneeze and snot filled Kleenex had me feeling more anxiety than you can imagine. I mean, fully prepare for the travel and all of the things that go into scheduling the surgery only to have to cancel it because of illness!! Getting sick is NOT an option! Although it has been down to the wire, Zac has finally recovered from his cold and is ready for his close-up tomorrow at 3:00, right after his friend Josh.

So...yes, I let Zac have I KEEM for lunch. What the heck! It's the small things in life that really matter. And no matter how prepared you think you are, in the end, you just have to trust that God has got your back.

Wednesday, February 29, 2012

Houston...We Have A Problem!

Friends, there is unfortunately something wrong with our PayPal account for the cookbooks. I will let you know when it is back up. Until then, if you would like to pay by check, please email me at and let me know how many you want and I will get you a total. Thank you for your support. I hope that this will not deter you from ordering and supporting Zac!

Saturday, February 25, 2012

Now We're Cookin'

I am so happy to announce the newest edition to our family!  Zac's Treats & Zesty Eats....our collaborative cookbook to support the efforts to remove Zac's Giant Congenital Melanocytic Nevus.  As most of you may know...last January we started on quite a journey.  We traveled to Chicago for four separate surgeries in efforts to remove Zac's nevus with a series of tissue expansion.  Click here to start from the beginning of our journey and to learn about the process.  With the expenses we have incurred thus far - combined with what we face this year alone, we created this cookbook in an effort to help Zac get the care he needs.  I hope that you will consider purchasing a cookbook (or two...or three...) and that you will spread the word to your friends and family.  Not only does the purchase support a fantastic (and very adorable) cause, but spreading the word is also a great way to educate others on this rare condition.  Cookbooks are $20 each plus $4 shipping & handling.  If you live locally, you can email me at and I will be happy to deliver yours to you.  Checks can be mailed to 1335 W. Medinah Ct. | Phoenix, AZ  85086 or you can easily use the PayPal button to the left.  Thank you for your support and prayers - it has meant the world to us.  Please pray for us as we continue our journey next Tuesday when we return to Chicago for Zac's next surgery on Thursday, March 1st.

Friday, February 3, 2012

A Hairy Situation

Here we are again...T-minus 4 weeks until we head back to Chicago for our next round of expansion.  Ugh.  It seems like we just got back from the Windy City and although it was beautiful with the orange trees and gentle weather - stepping into March weather...I am not looking forward to.  Especially since Punxsatawney Phil went and saw his shadow.  For Arizona that's just fine....don't threaten me with 6 more weeks of 70 degree weather LOL.  But for Chicago...ugh...better bundle up.  Ok, I admit's not really the weather I'm dreading...the grey cloud that hangs over me has nothing to do with snow - it has everything to do with an angelic little blue-eyed sweetie who is so lovable he can break my heart with just one smile.

This will be the third round of expansion so I now know what to expect...right?  This IS true... if what to expect is to expect the unexpected.  I have enough good nevus mommy friends to know that every round is different.  Just when you think you have it mastered...a complication that you have never experienced comes right along and puts you in a tail spin - flipped ports, strange bacterial infections, stitches that just won't heal, tissue expanders that leak...yep.  Although, there's a world of variables that can go wrong - I believe that the outcome is SO RIGHT!  So...cross your fingers, here we go again...

I was giving Zac a bath last night - because I see Zac all the time, I think I am blind to some of the changes that happen.  He has gotten so many spots since he was born that I definitely don't count them anymore, I don't even really think I see them until someone starts to stare.  But, I happened to notice that Zac's back nevus has gotten SO HAIRY!!  I mean like...need a good mow hairy!  So, I gave him a good trim...but not before I snapped a picture for you.

Not sure if the picture actually does it justice but if you look closely, you can see a lot of hair, especially up on the right shoulder.  Just one more reason that keeps me going forward on our journey of removing his giant congenital melanocytic nevus.  Zac has had a lot of itching these past four months and a lot of severe dryness. Though I cover him in Aquaphor daily, it doesn't seem to totally get rid of the dryness, scales and flakes.  I have had to switch to a prescription hydrocortisone cream a couple times a week.  I hate to use something that's not over-the-counter, but the itching is simply too much.  Hopefully we will be able to get two tissue expanders in this time.  I am hoping for one in the upper right shoulder and one on the left back to continue what we've done on the last two rounds.  It's double the work...but double the reward.  

There is one silver lining this round.  This round will only be 10 weeks.  This is good and bad....good because at the 11 week mark, Zac tends to get really uncomfortable; bad because...well, every fill counts when you only have 10 weeks!  That means it is more important than ever to keep Zac healthy this round, ensuring that we are able to do EVERY fill to it's maximum amount!  Here we grow again!

Our cookbook, Zac's Treats & Zesty Eats is under production and on its way!!  Pre-order a cookbook today and help Zac get out of this hairy situation!

Support Zac in his journey to remove his GCMN and reduce his risk of melanoma!  If you need multiple cookbooks or more information, you can email me at


Sunday, January 1, 2012

New Beginnings....and Old Business

Happy New Year everyone!  I can't believe it's 2012!!  I would say 2011 went quick - but when I think back on how much we accomplished and went through this seems like a lot shoved into a year ;).  Here's a recap:
  • January - Our family traveled to Chicago for Zac's first surgery and were there for 14 days while we learned how to accomplish tissue expansion.  It was stinkin' cold!!!  Zac had one expander placed and a large excision of nevus from his lower back/butt.
  • March - A great Nevus Outreach get-together where we met new nevus friends!!  After spending the night in the hospital for an infection, Zac, my Gramma and I headed back to Chicago for the removal of the expander.  We were so impressed by the amount of nevus Dr. Bauer was able to remove!  He also removed a raised, hairy satellite from Zac's forearm - it has since healed so well you can barely see the scar!
  • May - Zac turned 1; Zoie turned 5 and we had a festive double birthday party at the house!  Zoie graduated from pre-school and participated and took 2nd in a Kiddeeokee contest for MIX 96.9! 
  • June - I passed my CA Real Estate Test!!!  YEAY - I get to keep my job LOL!!!
  • August - Back to Chicago for Zac's third surgery and second expander placement.  Dr. Bauer was also able to remove 80% of two very large satellites on Zac's left leg.  These are looking good - we hope to have the remainder removed with the next surgery in March.  And I can't forget about the AWESOME Unofficial Nevus Outreach get-together at the hotel where we met so many new families and even Dr. Bauer himselft showed up!!  My precious little girl started Kindergarten!!  After a rough start with a flipped port and a tissue expander fill gone wrong...we ended the second round of expansion smoothly.
  • October - Along with my Gramma, we traveled back to Chicago for Zac's 4th surgery and removal of second tissue expander.  Results were good! 
  •  November-December - Our household has been fighting reoccuring colds and a bout with the stomach flu but are determined to start 2012 healthy!
This year has been filled with ups and downs.  We have had a lot of successful surgeries and have been able to stay afloat with our expenses though they have been great.  I just found out that I am already in the hole for vacation time this coming year due to a miscalculation in my 2011 sick time.  This means that I will have even less 'paid' time off from work this coming year.  Ugh...  I know that if I put my faith in God, we will find a way to push forward with the next four surgeries and the costly travel expenses that go along with them.

In March, on my birthday no less, Zac will have his fifth surgery and begin his third round of tissue expansion.  It is the first time that I will be traveling to Chicago all by myself.  Please continue to pray for us in 2012.  Here's a year in pictures to show you how far Zac has come (and to remind me so I can muster the strenght to get through this year...)
Happy New Year, everyone!!