Day 5: 5 Days of Brinkley

Year 4 has was full of surprises as he grew and matured in so many ways.  He headed back to preschool for the second year and first official full year of 3K.  The highlight of the year was our very first family trip to Disney World!  The Toy Story ride was his favorite.  Llama Llama Red Pajama was a hit for Halloween.  Brinkley on the shelf made his return.  The new year brought some challenges as we unexpectedly faced surgery to replace his damaged pacemaker.  He took it like a champ and rocked that surgery with a short hospital stay.  We enjoyed a couple of stays at the beach where he found his happy place with his toes in the sand.  His personality started coming out in big ways and he proved he is the king of mischief in this house! If you are keeping score the hospital count is now 36 weeks and 9 surgeries.  

Day 4: 5 Days of Brinkley

Year 3 Brinkley learned to walk on his own (without his walker) and started preschool for the first time. We had the privilege of becoming a "miracle family" for Children's Hospital and representing the hospital all over the region. We met some wonderful folks including the Furman Men's Lacrosse team who quickly became his buddies and lead him to love all things Furman. We made our first trip to NYC to see him featured on the screen in Time Square and walk in the NYC Buddy Walk. (The subway and meeting his friend Freddie were his favorite parts.) Brinkley on the shelf made his first appearance.  Dr. Brinkley had his g-tube closed and one other surgery. We added a few more weeks of hospital stay to the count. The doctor appointments began to slow down a bit and therapy kept going strong.

Day 3: 5 Days of Brinkley

Year two came with fewer hospital stays (4-6 weeks), lots of progress in therapy, learning to sit and stand on his own, finally eating baby food, and tons more love and snuggles. He graduated from in-home nursing care and we started using aid services. We still had far more doctor and therapy appointments than I care to count but we spent the majority of our time out of the hospital and had only 2 minor surgeries.

Day 2: 5 Days of Brinkley

Year one included 26 weeks of hospital stay, 2 emergency open heart surgeries, 2 other surgeries, numerous ambulance rides, 2 medical flights, hundreds of doctors appointments (honestly I can't count them all), nearly 100 therapy sessions, more ER visits than I care to count, millions of snuggles & hugs, prayers from all over the world (literally), building an incredible care team, and watching our faith grow. It's not the first year stats that I would have wished for, but it's what the Lord BLESSED us with.

Yes, it was a blessing! We learned the trust the Lord, lean on each other, and to embrace and celebrate every small victory. I learned to see the Lord in the small things and to trust the instincts that He placed inside me. I learned to seek wisdom in ways I never would have otherwise. We built an incredible care team that loves this little guy almost as much as we do. I met some amazing people and have had the privilege to walk alongside them in their journey with their children. I have met wonderful medical professionals whom I have been able to pray with and for and to encourage and love on as they have loved us.

Though it is not what I would have planned or wished for, when we embraced the situation that we were in and asked the Lord to use it, He did! He has been faithful to make this very difficult journey one that is filled with joy. I praise Him for the victories and the lessons learned.

Day 1: 5 Days of Brinkley

Brinkley turns 5 in 5 days so here's to 5 days of Brinkley. Day 1: we welcomed our 3 lb wonder into the world with the help of a team of 10+ people. He was six weeks early due to complications and we had the NICU team ready to help breathe life into a baby they expected to be blue and lifeless. As is his style, he surprised us all and came out loud and proud with no assistance needed. He was quickly whisked away to see cardiology and the team of NICU doctors. I was finally able to see and hold him the next day. He was so tiny! That's half of a cloth diaper covering his entire body.