Wednesday, December 26, 2012

Merry Christmas and Happy New Year!

As we reflect upon the last year it is amazing all that has taken place in our lives.  In March the bliss of being new parents was shattered when we found out Reesa was suffering from an incurable disease called Krabbe.  The shock and sadness was unbearable and indescribable.  Since then our life has been a whirlwind of hospital visits, surgeries, tests and doctor's appointments.  Our home has been a revolving door with friends and loved ones showing support for us and our little girl.  Many wonderful people have become a part of our world including nurses, therapists and hospice workers. From local doctors like Reesa's pediatrician, Dr. Barcellona, to Reesa's specialist in Pittsburgh, Dr. Escloar and her team.  We've also become close with a network of families dealing with Krabbe and other terminal diseases. Our lives  have become more enriched through the inspiring people we've met. Children's toys, high-chairs and baby bottles have been replaced with a feeding machine, suction device, pulse oximeter, oxygen and hourly medications.  It is certainly not what we pictured parenthood to be but we've become accustomed to our new normal and have grown to embrace it. Through our tragedy we've gained a new perspective on how beautiful people can be.  We participated in St. Louis Cardinal Manager Mike Matheny's golf tournament where complete strangers opened their hearts to us and Baby Reesa. Our dear friend Skip Schumaker organized a benefit for Reesa where most of the St. Louis professional athletes signed autographs for thousands of fans.  We had a once-in-a-lifetime opportunity in July at Baby Reesa Night at Busch Stadium where we threw out the first pitch in a Major League Baseball game.  Local friends and coworkers put together a charity golf tournament for Reesa's first birthday party with hundreds of attendees showing their support.  Although, for the most part, we've been consumed with positivity we've also had to part ways with a few "family" members  who weren't supportive of us and (believe it or not) were not accepting of Reesa. This was hurtful and disappointing but, thankfully, that chapter is behind us and we're stronger from it.  As 2012 comes to a close we'd like to say thank you to all of the people who've written us, supported us and prayed for us. We're so grateful for the many people who've been touched by Reesa and who have joined us on this journey that we continue to travel.  We have bad days and profoundly sad moments but overall we're happy and we truly cherish everyday we have with our little princess.  Reesa is comfortable, content and showered with love every  moment of her life!

Monday, December 17, 2012

Reesa and her Binky

Reesa recently turned 16 months old;  each day is truly a blessing.  When we went to see Dr. Escolar (Krabbe Specialist) in mid-September she was very happy to see that Reesa was still sucking on her pacifier.  Dr. Escolar said most Krabbe babies at 14 months have lost this ability.  Dr. Escolar encouraged us to keep working on this with Reesa because, although Reesa’s ability to swallow has diminished, it helps manage her secretions and Reesa absolutely loves it!  It is one of the only things that Reesa can voluntarily control.  It may not seem significant but in our world Reesa’s pacifier is a HUGE deal!

Here is a cute video of Reesa going to town (turn your volume up):

Friday, December 14, 2012

Jewish News of Greater Phoenix Article