Wine, Tom Selleck, & Expansion

Four weeks into the 8th round of expansion and Groundhog Day is upon us...  The slight cough, the fever, the extra hugs for mommy.  The sound of light sleepless moaning and coughing coming from down the hall as I sit here and put my feelings onto virtual paper.  Worse than your common cold, I know it well... it is most likely an infection or perhaps a virus waiting to turn into one.  I am exhausted.  Not just physically.  I know tomorrow we will be placed on precautionary antibiotics that we most likely will endure for the next 8 weeks.

My heart, soul, and very being are so tired of going through this with my little man. Though we are veterans, though we are close to the end, this is the steepest part of the hike.  The part where exhaustion sets in, the part where you wonder if you were crazy to climb this mountain in the first place.  Sure, the view is breathtaking to see how far we have come... but it is not quite the money shot at the top of the peak. This road is narrowing and the friends who traveled with us before are even at the top of the peak enjoying the view...yet we are not.  We are still climbing, braced with what we need for every expected pitfall.  There is one thing I know for sure.  Some things are better with time...wine, cheese, Tom Selleck...but the process of tissue expansion is not one of them.

Two fills under our belt and we have had to stop until we can get this illness under control.  We go to lengths to prevent this.  Birthday parties at Chuck E Cheese, after school events, bounce houses are all a normal 5 year old's luxuries that Zac has to give up in this 12 week period.  This year we have a new obstacle....kindergarten.  Zac loves school and his teachers do everything they can to keep him away from illness and when it does strike, I know he will be missing out on one more thing he loves.

Please pray for my little guy's health.  He has the most amazing spirit and joyful heart.  Please pray that God gives us the strength we need to keep the pace, stay the course, and appreciate our own journey.

I am adding a private link to Zac's last fill for anyone who would like to take a peek of what it is like to fill his tissue expander.  This round, Zac has three new friends - Thor, Thing, and Scooby Doo, names for his new bubbles.  Take a look at this amazing kiddo...  A Weekly Fill With Captain Happy

Growing Pains

Growing Pains...throughout life...you don't always feel them when it's happening but when you look back and realize how you got through the 'growth spurt' it is truly amazing.  I look at Zac and I simply cannot believe this kid is about to have his 14th surgery!  Even today, he is fully aware that his bubbles need to come out.  This has been a VERY vocal round of expansion.  Gone are the days of simple distractions like a light-up toy or even the iPad.  Zac even plays a part in helping fill his tissue expanders by holding this or that and he likes to point out, after the needle goes in, that it didn't hurt.

The journey seems to move in slow motion now that he is older.  The process is both exhausting and frustrating as the skin does not stretch as much and we get less volume in the expanders with each weekly fill, giving us less expanded skin to work with at the end of the expansion process.  Then there are the several missed weeks we spent fighting an infection but narrowly escaping a hospital visit (PRAISE THE LORD!).   However, there have been many nights of discomfort far worse than any I have experienced.  After the last fill, Zac spent the entire night (well, until about 4:30 in the morning) waking up crying every half hour screaming that his bubbles hurt - growing pains, I suspect.  I fall asleep rubbing his bubble with lotion until the next wave of pain wakes him.

Day to day during expansion has become normal to us.  So much so, that I often cease to notice the stares and hushed conversation Zac's bubbles create.  And great memories are made in the midst of this chaos.  I took Zac to play in a small splash pad and realized that, at almost 5 years old, he had never played in one.  With his size 6 shirt bulging in several areas as the water prompted it to cling to his body, he laughed and bounced around.  The joy and happiness that filled his little heart was overwhelming and that night before he went to bed, he said, "Thank you Mommy for taking me to the water...I had sooo much fun."  By the time his sister was his age, she had hit almost every water spot in town and then some and was able to swim on her own.  However, lessons aren't something we have done for Zac yet.  Something so simple, a casualty of our rounds tissue expansion and healing time.

In the past several months, with the growing number of birthmarks he has accumulated, I have started to worry about the future adversity that is certain to come in the school years. Filling out Kindergarten paperwork has only reminded me of the special accommodations, though small, that he will need.  His sister has played the unfortunate part of guinea pig as I try out schools that offer both caring teachers and students that are taught compassion and hoping I have chosen the right one in Northwest Christian School - a private Christian school I have enrolled them both in for the coming school year.  I feel in my heart that this choice will be the best for both of my children and know that the Lord will find a way for us to pursue this path.






 

The Day I Didn't Cry

I know what everyone is thinking....surely after 13 surgeries under my belt, I must be used to the routine.  Here's roughly what it looks like: 
1. Fly to Chicago

Brrr...it's 0 degrees but feels like -11

2. Wait for the evening phone call that tells you what time slot you won for the following day, if you have a late surgery you plan out what you will do to keep your kid occupied so that they don't notice they are starving from not being able to eat past a certain time. 
3. On the day of the surgery, walk into the hospital and give them your name. Then tell them you know exactly where you are going and that you could basically find it with your eyes shut - get sad clicking sound from the volunteer as they give you the 'aww, I am so sorry' look. 
4. Once you are settled in the room and faking the biggest smile ever for your kid, open all the 'guilt' gifts you just bought them at Target while spending hours in each toy aisle trying to keep their mind off the fact they haven't eaten since 6 a.m. 
5. Catch up with the nurses you have seen a handful of times for the past 4 years.
6. Give your kid the 'happy' medicine that reduces their anxiety and causes hiccups and slurring of words (actually quite entertaining).
7.  Here comes our friend Ernest, we call him Ernie).  Ernie is slow & steady, has a Hotwheels collection that would rival Zac's, and is the one constant.  Ernie always wheels us to the pre-op room.
8. Now in our second holding pattern.  We wait.  This is the biggest anxiety build up.  You feel it coming on - the waterworks - but you refuse to let the fountains spring forth.  I have some lovely banter with Nancy who I just found out is from Midland, MI, she keeps Zac in his cozy warm blankets - which is ironic because the kid hates anything warm.
9.  Then they come to take my precious boy - I am assured that I shouldn't cry because he is 'in the best hands'.  This I already know otherwise I would not have taken a 3.5 hour flight into subzero weather to have Dr. Bauer attend to my child.
10.  Cry.  Cry all the way to the waiting room.  Sometimes cry turns into ugly cry.  Sometimes cry is short & sweet and just causes a minor headache.  Either way...there's always crying.
Now that's a Top 10 worthy of Ryan Seacrest.

I look forward to the day that I don't cry.  Someday it may actually happen but I doubt it.  I am not crying out of fear.  I am crying because I dread when he wakes up in recovery, wanting me to hold him but knowing the discomfort it will cause to move him.  I cry because I know this is not the last time (not even close) that we will go through this.  I cry because I know that I have 12 weeks of living on pins & needles.  Twelve weeks that have become like a game of beat the clock.  Keep him healthy. 
Get those bubbles nice & full before illness strikes or a complication arises and get him to the finish line - not early but right on time.  It's a tricky obstacle course. 

But of all the things I cry about, not one of them is for regret.  Do I wish we didn't have to go through this?  Duh...  But I am so happy we started this early.  So proud of myself that I had the guts to decide for my child instead of telling myself he could just decide for himself later.  So amazed at all we have accomplished and that even in these times that I dread, we manage to see several silver linings.  The biggest one to me during this process has been the Facebook Group for Giant Nevus Removal and the amazing strong parents in the group - if you are reading this and you are contemplating removal or are in the process - know that you are not alone.  There is support out there.  Look us up and let us support YOU. 
Let's go Round 7...our tears are dry and we are ready!!