Friday, October 3, 2014

And it begins!

Phoenix is one of the most treasured here and in heaven, he has a laugh that fills the room and causes other to smile, he has emotions that are sometimes all over the place, he's obsessed with his Papa and his siblings and he never ceases to amaze me in his ability to overcome. He was born with Spina Bifida and Severe kyphosis. Kyphosis +curvature of the spine like a hump back. The severe part of Phoenix kyphosis is that it was a 67 degree angle and was outside his body. At birth they shaved it down and grew a skingrapht to cover over it. There is no car seat, wheelchair, bed, cushions or ANYTHING to accommodate a delicate protrusion covered by even more delicate skin.
Phoenix's back
Back view
This week we received the call that we have been anticipating for months, well technically years. At birth we were told that the Skingrapht Phoenix had on his back would need to replaced within a year and the protrusion of his spine replaced with rods. Not the best news or reality to take in with an infant.

How he Loves his sisters
Family Photo, we're Happy but not so Photogenic

So here we are 4 years later, which is nothing short of a Miracle, in that he has not had any spinal infections and the Skin has lasted this long. But we knew this time last year it was time to get the ball rolling for an extensive surgery for Phoenix, as the day to day challenge of caring for his back and the many responsibilities and limitations that come with it for him were beginning to wear on him and us all.

He Lights up a room with that smile and Best Laugh around!

Here's the link to share:

We knew that only the best Children's Hospital would do (that's Boston Children's Hospital). So the referrals began, the medical record releases, phone calls, jumping through hoops, planning.... and then the waiting.... Waiting for one phone call saying we would like to see Phoenix in person to evaluate him for this intense Spinal surgery.

This week that phone call happened. All 12 specialists agreed to see him on November 12th-14th, Mike, Phoenix and I will be traveling to Boston, he'll undergo tons of tests, imaging and exams. We'll get a full picture of what the road ahead looks like and we already know it's gonna be a Long road of preparation.

We need your love, prayers, support and help! The road ahead will entail Mike traveling to Boston with Phoenix for surgery and I staying at home with the kids ( around a 3 month stay). It is FULL of details, expenses and planning that I can not even launch into nor think about yet. But will when we know more in depth, I will be sure to share!

In the meantime, spread the love and story of our darling Phoenix to help us pay for this first part of the trip...

If you asked every friend to donate just $5-$10, we would reach this goal quickly. Here are some of the costs you all would help cover!

Hotel and Food for 4 days in Boston
Car Rental
Plane tickets are bought
6 months of Weekly trips to Children's in Milwaukee hospital for preparing his body for this surgery
A second and possibly 3rd trip to Boston

Thank you for Loving and supporting us!