God's Blessings...

This entry is way overdue! We are starting this so that all of the people, family and friends can keep up with us:) God is working everyday in our lives and we can't hardly keep up either.
We just finished up our "big trip" for the summer. We were blessed to go back to our home in Indiana to have a great three weeks to spend with everyone. We packed everything in, saw as many people as we could and laughed a lot:)

During our trip, the Lord orchestrated us to go to visit Johns Hopkins, in Baltimore MD, where the #1 Cloacal Exstrophy Urologist performs 5 to 7 surgeries like the one Jace needs to undergo. Dr. John Gearhart met with us and gave us all the details about the surgery. The procedure includes cutting the pelvic bone in four places called a bilateral innominate and vertical iliac osteotomies and placing an external fixating device. They will then crank the pelvis together over a 2-3 week period. The gap that his pelvis has is 8 cm wide. After that is done he will go back into a second surgery after the 2-3 weeks, and undergo a soft tissue surgery where they will place the bladder back inside his body and some reconstructive surgery. That is all, in a nutshell:)

We would be looking at staying at Hopkins for 6-8 weeks, depending on how everything goes. Jace will need to be very still, laying on his back. Now, this momma and daddy know it's going to be difficult to keep this baby down! Not only does he not like to sleep on his back, he loves to jump, climb and be crazy! So we are preparing for the possibility he will need some sedation. Yes, pretty sure.
While at Hopkins, we had the pleasure of meeting a boy that had undergone the same surgery and met his parents. What a joy to have someone to talk with and to see with our own eyes what it might be like when Jace has his surgery! It was a surreal feeling also, knowing the pain that the little boy and that Jace has and will go through. Sometimes I feel that we are advocating for a surgery that will improve Jace's life but also, to look at him running and playing, we don't want him to go through all the pain. We are still waiting for our insurance to give the ok for Jace to go to Hopkins. Until then, we pray for God to intervene and to lead the way.

God has it all planned out, even before the creation of the world, He knew Jace, Ian and us, and it is very comforting that He knows the future for us also. We are all in His Mighty Hands. He was so good to us on this trip! We were able to go to the Johns Hopkins Annual Convention for BE (Bladder Exstrophy) and CE (Cloacal Exstrophy) patients of Dr. Gearhart's. Many people where there. Adults and children that had been under Dr. Gearhart's surgical expertise. It was amazing to see so many people who where all bonded by this one element in their lives. We were feed so much information during that time! We also met with a family who was there with their son that was at Hopkins, that had this surgery done. So much information and a common love for each others struggles.
It was a great time for all of us as a family on our trip!