People have been asking what we found out after our stay at Shriners Hospital for Children, so in case you didn’t see my update on Facebook, here is the plan:
Due to his genetic disorder Osteogenesis Imperfecta (OI), Kieran’s bones have a severely low density, and so he is not allowed to carry anything over 5# (including a heavy backpack). He cannot do anything that has an impact, but we will begin aquatherapy at the hospital in the next few weeks to strengthen his leg muscles. He has to be extra careful about everything because his bones could break very easily. He can’t even listen to very loud music because he could break his eardrums and there is no cast for that. 🙂
He will start IV infusions with a bisphosphonate drug that will strengthen his bones over a period of 3 years or more. He will do this like a chemotherapy patient: going to the hospital in Springfield once a week for 3 weeks, then about 3 months off, then start the cycle over again. His first 3 appts are Mar 8, 14, and 22, so you can pray for him those days. We will be at the hospital at 8am, he will have some labs drawn to check calcium levels, and then he will sit for at least 4 hours to receive the IV meds. We will likely be there for about 6 hours before driving home. Please especially pray for his first infusion because he will have flu-like symptoms (fever, bone aches, headache) for up to 48 hours after the infusion. They say this usually only occurs after the first treatment.
After 2 rounds of these infusions, we will go back to Shriners for a couple days in July to recheck his bone density, etc. and see how effective the drugs have been. At that point, they may schedule surgery for a few months after, or they may wait until he has had more rounds of the treatment.
When surgery is done, they will break his curved femur (the one that was broken a couple times at age 10 and didn’t heal correctly and is the reason his left leg is 8cm shorter than the other) and put a metal rod into it to straighten it. (Or it is possible they will get in there and see the rod won’t work and then put a plastic plate in instead, and then replace it with a rod later. Please pray the rod will work for him so it will be more permanent and less surgeries.) During the same surgery, they will break the two bones in the lower part of his leg and attach an external fixation device (warning: don’t click on that if you are faint at heart! 🙂 ). With this device, we will turn knobs a tiny bit everyday to lengthen his leg, and then we will need to drive (2+ hrs) to Shriners in St. Louis once a week for a month or two until they get things to the length they want it. The device will stay on at least 5 months. (If anyone has any basketball breakaway-type pants about size 10 that they would like to donate, he will need something he can on get over the device.) We will also have an hour of physical therapy, twice a day, to do at home during those 5 months.
The point of the surgeries is to lengthen the left leg so that it matches the right leg and he will no longer need to walk with crutches. It is possible that after the first leg heals, they may have to make adjustments by putting a rod into the other femur. (It is bowed some too, as are most of his bones, but not as badly.)
His back does have compression fractures due to his OI, and so the broken vertebrae cause the shortened torso and curved spine, but since it is only curved 30% and not too badly, surgery is not warranted. The growth plates in his lower body were likely fractured as well, so that is why he is shorter and will not likely grow much more—unless, of course, God has other plans. 🙂
There will be a lot of driving, a lot of doctor appointments, a lot of pain, and a lot of work to make this all happen, but there is hope!! The second day we were at Shriners before the doctors had decided a course of action, the geneticist was asking a lot of questions through a translator and explaining a lot of medical things to make sure Kieran understood the nature of his disorder. At the end, Kieran very politely told him that he was happy to do the testing and the work and was happy if it would be helpful to other patients in the future, but that he knew that nothing was going to change for him. The geneticist looked surprised and said, “Well, I’d like to think we can do something about this!” Tears rolled down my face. Really??? There is hope?? This CAN be fixed?!?
I had braced myself and him for the fact that even in America, not everything can be fixed, but we will try everything we can. In the meantime, he could go to school, get a job, have a life—none of which would be possible for a person with disabilities in Ethiopia where he was from. And he always has God with him, guiding him, and writing a story through him of His grace and glory.
I think we are still holding our breath a little, wondering if it really will work. But since that third day when they told us the plan, I have seen Kieran walk a little lighter (pun intended!), and hope is slowly lifting that burden off his back. I do catch myself thinking things like, “Well, maybe NEXT year he can go out in the snow and play,” or “Maybe this summer he will be willing to get in the pool with us,” or “Maybe someday he will dance with us!” (His region in Ethiopia is known for their dancing.) Oh, the possibilities!!
Thank you so much to everyone who has prayed for Kieran, beginning way back when he was at the orphanage, and all the way through today! Please keep praying—God is writing a beautiful story of healing and redemption and you are a part of it!! You are a blessing to us!
Pictured at the top are Kieran with his geneticist and nurse—both very competent and very caring!