being patient

We heard from Cleveland Clinic today!! We will not have a firm appointment date/time until tomorrow morning...but we KNOW we are going! It was a hectic day as we made and received calls and talked with insurance and waited and watched our phones. We heard from them twice today AND our insurance company is already working with them!
Clearly, God has a specific plan for us to go to Cleveland...so we are just going to trust His timing.
As Justins CK levels are continuously going up and his pain never decreases...we are hopeful to travel ASAP! We want to get going before he begins to feel worse. The most amazing family has our travel arrangements completely handled. Two other families have offered to help as well and will help us get the kids up there if we need to be there longer than just a few days. I am just once again...blown away. Justin and I prayed today that one day we would be able to help a family in such a tremendous way.
I picked up Justin's pain patch today...please pray that it will work!! It was VERY expensive...but God provided the money for that too.
Leaving the hospital yesterday was a nightmare. It took four hours to get discharged. He was so so ready to get home and be with his babies. Dr. F came in and said "I have thrown the kitchen sink at you and now its time to go home and wait for Cleveland to get you in"....The hospitalist, Dr. Anumula, asked that we please email him with updates on Justin's case. He said that he had no more options on how to treat Justin and would love to learn from his case.
Seriously.
He is a medical mystery. I am so sad that his body has to feel this pain and have this disease in it. I hate that my handsome husband had to have chemo running through his veins. I hate that he hurts. It breaks my heart every day. I dont understand why none of the treatments have worked.
There are going to be answers in Cleveland. I can't wait.
On a side note...I went to Target today to get Justin a new pillow and when the baby and I went to get back in the car...it wouldnt start. Toyota of Boerne totally came through and handled it and got me home...but I dont have my car and that just stinks. I am ready for a day where nothing happens. A boring day would be good.
Please pray for the kids during this crazy time. We are doing our best to keep them in their regular routine. They sure were happy to go to all be together yesterday and today...their little faces never stopped smiling!!
Thanks for keeping up with us and thanks for your prayers.
Hopefully I can update you tomorrow with our travel plans!!