Update after Kieran’s week at Shriners


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!

Kieran update and Behind the Story (BTS) 6.1

First of all, an update on Kieran’s medical issues, in case you don’t make it to the end of this long post.  🙂

It turns out that along with the severe lack of Vitamin D Kieran received as a child (no sunlight for a year or two and no dairy his entire life), he also has a genetic disorder called Osteogenesis imperfecta (OI).  However, his particular strand of OI has actually not been seen before.

We are so grateful for the doctors we have seen so far, and are especially amazed to see how God’s hand is at work even in the next step.  Kieran and I (Suzanne) will be headed to St. Louis early Monday morning, Feb 4, to stay at the Shriner’s Hospital for Children for a week of testing and hopefully some answers as to what we do next.  We will be there till Friday, Feb 8, seeing some of the best doctors in the world for this particular medical issue.  (We are so grateful those doctors are only 2 hours away!)  I had pursued Shriners early on before we brought Kieran home, but I felt the person I talked to had not given me much hope, so I dismissed the idea.  However, God sent someone I barely knew at church to come to my door with a Shriners application, so how could I say no!

Thank you, Lord, for repeatedly filling in the gaps where I would otherwise miss them altogether.

Satan apparently tried doubly hard to keep Kieran’s God-given purpose in life at bay, but I believe God will redeem it all and still use it for His glory.  We are doing all we can to help him navigate this life and listen for God’s direction.  Will you pray with us?

Secondly, people have repeatedly asked to hear more of the story about how God led us to Kieran.  In my post last May announcing Gowin Kid #6, I mentioned that during the month of March/April preceding Easter, God revealed to me multiple times that Kieran was supposed to be our son.  I couldn’t share those revelations at the time because they were so specific to him and we were not supposed to post any details about children from the orphanage until we had passed court and they were legally ours.  Here is one of the ways God led me to Kieran.

It was a Tuesday in March 2012 that I first saw Kieran (his anonymous name on our agency’s Waiting Child List was “Sage”).  He was older so he did fit the part I already knew about our future son, that he would be older and by himself (no siblings, at least to be adopted with him) and about to age out of the system.  But my honest first reaction when I saw his disabilities (that he walked with crutches along with other medical conditions) was that this would be too difficult for us, already knowing that adding number six would be a challenge, spatially and financially.  I tried to dismiss him from my mind, but within 24 hours, God had helped me open my heart, and he was all I could think about.

Then the following Friday, I came home from spending the day at a mom’s conference (Hearts at Home), and I grabbed a movie for the kids to watch for family movie night, about an orphan named Hugo.  When I got home, I saw that Michael was exhausted from watching the kids all day, so I suggested he go take some quiet time instead of joining us for the movie.

(Spoiler alert!)  The movie is about an orphan, living on his own, trying desperately to make an old robot work (that he and his late father had worked on together), so that he could get what he thought was a message from his father.  There is also a lawgiver, once an orphan himself, who is inhibited by a leg brace and is hunting the orphan down to put him in an orphanage (reminded me of Javert in”Les Mis”).  He also reminded me of the roommate of the main character in “Meet the Robinsons,” a boy who never got adopted and turned into the bad guy in the movie because of his sadness and resentment.  The third main character is an older man who is hiding a secret that could unlock everything, but he is also hurting.  Here is the scene at the end of the movie that hit me so hard:

Hugo is risking everything to try to bring the robot to the old man, and he and the robot are barely saved from being run over by a train, but then the policeman catches him.

(Police): “Are you injured? Come on! We’ll let the orphanage deal with you!”

(Hugo): “No! I don’t belong there!”

(P): “Where do you belong? A child has to belong somewhere.”

(H): “Listen to me! Please, you have to listen to me! I don’t understand why my father died, why I’m alone. This is my only chance … to work. (pleading) You should understand (looking at the policeman’s leg).

(Old man shows up): “I do! I do! Monsieur, this child belongs to ME!”

(Policeman reluctantly lets go of boy)

(Hugo runs to Old Man with his robot): “I’m sorry. He’s broken.”

(OM): “No, he’s not! He worked perfectly!”

It is this amazing triangle of grace!  The old man saves the orphan after the orphan risks his life to bring the robot to the old man to save his life.  Because the policeman sees this grace from both of them, he is able to finally let go of the revenge and bitterness he had harbored for so long.  Thus, the old man and Hugo save him, as he lets go of the orphan to allow him to go to the old man and be safe in a family.  Beautiful!

In this movie, it’s like Hugo and the policeman are the same person, just years apart.  They both desperately want a family to belong to.  They both desperately want to work, to have a purpose, to be complete.  Then when the old man says, “This child belongs to ME!” I knew to the very core of my being that “Sage” was supposed to be my son!

This was just one way in which God unexpectedly used a quirky little movie to show me His plans.  Since Michael did not watch the movie with us, and I had just recently vowed not to bring up adoption until after Lent was over, this was the first of many instances where I knew God was leading us specifically to adopt Kieran, but we didn’t get to discuss it till after Easter.

More posts to come about the revelations of that month (BTS 6.2 ….)