Monday, April 21, 2014

Winter Recap

February was a busy month for our family. We started the month with celebrating Ben and Alex's 10th birthday at the Maverick's game.  Thanks to the Burke family for giving us the chance to meet & greet Trey Burke (rookie for the Utah Jazz) after the game.    The next morning we flew to Breckinridge, Colorado for our first ever ski trip.  We were so proud of how quickly Ben and Alex turned into little snow bunnies.  Ben would spend his days snowboarding with his snowboarding instructors.  Alex spend his days on the slopes skiing.  The boys loved the adventure so much that Alex asked if we could move to Breckenridge.  Then from there we went straight to Nebraska to host Dave and Gerry's 50th Wedding Anniversary party.  It was so nice to see everyone and enjoy the company of good friends and family.  

Dave and Gerry at their anniversary party

Family photo at the top of our resort. 

After months of training, I finally ran my 1st half marathon in honor of the babies (Fort Worth's Cowtown Marathon and Half).  I wore this sign on my back and was overwhelmed on how encouraging and supportive fellow runners were to me during the race because of the sign.  "Way to go mama!"  "Your babies are adorable!"  "God bless your children!"  How could I stop running with all my heart while total strangers were showing me so much love for Dori and Wynnie?  I was so humbled and inspired.  That's just the 1st of many half marathons in my lifetime.  Our babies are so awesome and I'm thankful to have such a supportive husband and 2 other very encouraging sons to help cheer me along in my chubby mama running journey.  Thanks guys!!! 

Babies and I being silly.  We enjoy taking selfless… we fancy ourselves quite photogenic. ha ha! 

Back in the week of March 24th Wynnie came down with the flu (strain B).  Once you get the flu, you usually don't get the same flu strain during the same flu season (Fun Fact #1).  With the help of Tamiflu, lots of bugs and kisses, and isolation upstairs while sick (being cared for by either one of us or his day nurse Hilda,) Wynnie has fought back in his usually sweet and calm way.  He had to be kept in isolation away from the other 3 boys because as long as he was running a fever, he was contagious (Fun Fact #2).  From the day he got sick we had to place him on oxygen since he couldn't keep his O2 levels on his own by just breathing room air.  So since March 24th we have been going back and forth between the doctors, running labs, adjusting meds, trying room air for short periods of time, and exchanging many phone calls and emails to our specialist's nurse.  Thankfully nearly a month later Wynnie is able to spend longer times on room air.  At first he couldn't stay more than 20-30 seconds on room air before plunging down to dangerous O2 levels.  Last week he could stretch it out for 45 minutes to an hour on room air safely.  After being prescribed an antibiotic this Easter weekend, he decided to wake up today (Monday) and breathe in room air like boss.  So far this morning he has been maintaining into the low-mid 90's all on his own.  We're so proud of him!!! Our goal is to hopefully get him back to baseline (no need for air compressor or O2 tanks at all -- only bipap at night to help him breathe).  I have a good feeling he is trending toward that now.  

I want to also send a heart felt hug and offer prayers to the Amick family in Massachusetts.  Their 2 year old son Charlie earned his angel wings this moth.  He is running, jumping and playing with his big sister Amber in heaven now.  The Amicks are a young and loving young couple that I was fortunate enough to meet about 3.5 years ago when I went to work in Boston for a week.  I was so happy to hold and hug little Amber, she was such a sweet happy little girl, the only icell baby I have met in person.  When we found out they lost their second child to icell it really hit Chris and I very hard.  It's just not fair.  I've been keeping them in my heart and in my thoughts this past month when things have seemed to get stressful because it reminds me that life goes by too quickly to ruin it with things that don't matter. 

Hoping all our friends and family near and far had a wonderful Easter! It was a nice weekend for reflection and giving thanks. I also learned without a doubt that happiness is a choice.   I'm so inspired on a daily basis by all the other i-cell/ml2 parents that we follow online.  Although we are all in the same boat, and we share intimate moments of frustration, prayer and anger -- I can honestly say there's not one single icell family in our online support group that is negative.  They rejoice in the little things.  They celebrate the tiniest of milestones.   They feel blessed. They don't ask for pity. They don't bring everyone down around them.  They CHOOSE to live a life full of happiness.  Yes they all have terminally ill children.  Some of them have already lost one child and are just waiting for the inevitable for their next child.  Yes they all have mounting medical expenses, have to constantly fight on the phone with insurance companies, constantly have to take off work to tend to their sick children, get stares when they are in public with their child,  etc etc.  But instead of dwelling on how hard their life is, they put their energy into making the good stuff even better, bigger and brighter than any other darkness in their lives.   Their fierce and powerful love for their children inspire Chris and I on a daily basis.  They choose happiness, so we choose happiness right alongside them.  Why?  Life is all about choices.  If you don't your life then choose to change it.  If not you're only sinking into your own darkness.  I'm so thankful for role models God placed in our lives who inspire us to be strong and feel blessed each and every day.  Wishing you and your family BETTER, BIGGER and BRIGHTER things too. Choose it friends!!