God is in control and all the glory goes to Him
I don’t even know where to begin. It’s been a roller coaster of emotions over the past month. The one thing I know without any hesitation is that God is in control. We can feel God’s hand on every step of this journey and it brings peace to us. We have had many Earth angels bless us and we know it’s God clearing the path. How cool is that?
Shortly before Christopher’s fall, my husband was laid off from his position of 17 years. It was the reason we moved away from our family and friends more than 16 years ago. It was a devastating blow, to say the least, but I know it was part of God’s bigger plan. He knew what would be happening with Christopher. I had begged God one week prior to please heal Christopher and let him walk again after watching some high school boys cutting up and just being kids. I longed for that with Christopher. The next week, he fell in our kitchen after a year on crutches and we learned the real truth about his hip. We could have been waiting three to four months just barely getting by but it wasn’t God’s plan.
We discovered that his hip was bone-on-bone and re-collapsing. We were crushed when Dr. Standard’s physician assistant told us Christopher needed a hip fusion or total hip replacement. I talked with Dr. Standard for forty minutes about it but I couldn’t wrap my head around hip fusion which freezes their hip in one position. It’s no longer a moving part.
We prayed and our Earth angels kept giving us suggestions. Send your x-rays to other physicians and see what they say, if it’s the same then you know. We went to our local ortho at Texas Children’s Hospital because they scheduled the appointment after seeing the ER x-rays. Dr. Rosenfeld said the exact same thing as Dr. Standard but his hip fusion was with an external fixation instead of an internal fixation. Then, we contacted Dr. Kim at Scottish Rite Hospital because I noticed they had a ton of studies around the hip fusion. Originally, our appt was April 16th, then Dr. Kim’s assistant called and said he wanted to meet with Christopher with a group of physicians and could we come that Friday or the next. We went that week and came out with our eyes wide open. Hip fusion wasn’t so simple and there is a 50/50 chance of it not fusing, then you go through the entire process again, which is 5 months. Christopher would never be able to sit normal, climb stairs, ride his bike or put on his shoes not to mention that it puts a heavy load on your spine and knees which will cause issues later. Scottish Rite requires psychiatric evaluations before the procedure because most kids cannot handle it. We figured out it was not the avenue for us.
Then, I sent Christopher’s x-rays to Dr. Paley in West Palm Beach. I expected to hear the normal hip fusion or THR response but that’s not what happened. He said he would need to evaluate Christopher in person to determine the correct path and his first availability was late June. I responded that I would at a medical IT conference in Florida late February. He said, ‘If you wait on me, then I’ll see you.’ That’s exactly what we did. God had opened another door. Dr. Paley thought long and hard about Christopher and gave us his suggestions. Remove the hardware, perform a valgus or reshaping osteotomy and the external fixator for four months. He gave us a chance before the total hip replacement but he didn’t think the surgery could happen before the end of the summer due to his booked schedule. We had been gone from clinic five minutes when his surgery coordinator called with a date of April 9th. Praise The Lord!
I talked to a mom with a son that has bi-lateral Perthes and he was bone-on-bone and had the same procedure Christopher will have in April with Paley. Once again one of our Earth angels connected us. She told me how her son had recently made the golf team, was snowboarding and water skiing. None of this is by consequence! It’s hard for us to leave our Baltimore family but everyone knows we have to do what is right for Mr. C.
West Palm Beach Bound
We’ll have to stay in West Palm Beach for 2 – 3 weeks. It’s amazing that we have avoided the external fixator for 4 years and have come full circle to the external fixator. Christopher made the decision because it’s his journey. We are not as scared as in year’s past due to our Perthes family. It will be hard to leave our littlest one behind but he’ll be in good hands with his Nana. She has been our rock through this entire journey and we are so grateful.
It’s amazing to see God’s hand in all of this. We need specific prayers for Christopher’s femoral head to be alive! It’s a blessing to know Michael lost his job with pay so he could help with Christopher. Plus, Christopher falling was the beginning to the real truth about his hip. We went to Scottish Rite and came back with our eyes wide open. Then, went to West Palm Beach and was offered hope. Our Earth angels have paid for hotels, airfare, first fruit gifts (which covers the expense of the entire Florida trip) and their prayers. We’ll never be able to repay them but we will pay it forward. We know God is going to heal Christopher and his testament is going to be amazing. Perthes is a long journey but not impossible. I pray our journey ends soon and we can support the new families starting with this disease.