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.  So...you 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 in...you 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 day...as 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 particular...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  

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 began...you 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 it...today 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 trains...in 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 cry...one 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 days...it is going to take a few more surgeries to finish what we have started here.  But as for the 7th surgery...it will go down in my book as lucky #7!

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

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 remember....you 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.

Feelin' Bubbly

Well...here 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 made...now...I am a pro!  LOL  Okay, okay, well, no one is ever a pro at this process...no 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

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!

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.

700cc!

Last week's irritated stitches