Monday, November 28, 2011


Taking an impression to make Miduk a body cast

Miduk with Kartika

Well let's start at the beginning of a very long day!  Our day started with Miduk singing "Hakuna Matata" from Lion King as we walked Sugar this morning.  We purchased a pirated copy of Lion King in Bali while we were living overseas. (shame on us!) Unfortunately, the problem with pirated DVD's is that sometimes they work and sometimes they don't.  Our copy cuts out about halfway thru, but not until after Miduk heard the Hakuna Matata song and became obsessed. Hakuna Matata! No worries!  (Of all the Disney movies I watched with my kids when they were young, Lion King was definitely mine and Shelby's favorite!) It was freezing outside this morning (29 degrees!) but the sun was shining and we had a great walk.  Miduk got off his scooter and touched the frost on the grass of a neighbors yard and said, "What this, Mom?" So I got to try to explain "frost" to him, something he will never have to deal with in Indonesia!  :)  We saw a ton of ducks on the pond and he liked that.  Then we saw a bunch of those crabapples on the ground, at least that's what I call them.  Those bumpy-looking bright lime green things about the size of a huge softball?  He picked one up, smelled it, and then proceeded to smash it onto the ground and smelled it again.  Have you ever smelled a crabapple?  Well now I can say that I have.  And they smell pretty good too!  When we got home I showed him a kaleidoscope toy that I had stuck away in a drawer.  Remember those from your childhood?  You look into one end and rotate the other end and all the colorful crystals make different patterns?  Miduk thought that was pretty neat.   Talk about sensory overload!  New sights, smells, sounds, tastes - even touching the frost - I couldn't help but thinking about my first few months living in Singapore when I would just get completely overwhelmed by everything-the noise of the city, the unfamiliar (and unpleasant) smells, the different languages being spoken all around me and just wanting something familiar (like barbecue!).  It's culture shock alright.  I think Miduk has handled it all very very well.  Rather than retreating to his room (which is what I sometimes did for some peace and quiet), he is eager to experience things and seems to take it all in stride.  He has added Frosted Flakes to his list of likes and candy canes made the dislike list.  He's not too crazy about peppermint.  Maybe I will get some of the fruity flavored ones...

We went out for a quick lunch at Culver's before heading to Scottish Rite for our follow-up appointment.  He chose a cheeseburger and fries (he is eating cheese!).  We talked about McDonalds and he said he has only been twice with Linley in Medan and Jakarta, but no one else in his family has ever been to a McDonalds restaurant.  (I don't think they are missing much do you?)  I asked Miduk what is his favorite food in America so far and he said waffles! haha  followed by sausage and then ice cream.  I then asked what is his favorite food in Indonesia and he said "rice and pig".  :)

Today the purpose of our visit at Scottish Rite was to meet with two of the orthopedic doctors and discuss their proposed treatment plans for Miduk.  Usually the hospital provides interpreters but unfortunately they weren't able to secure one for today's visit. We knew this ahead of time so I was able to call Ronny, one of the local Indonesian men who called us right after Miduk arrived.  Ronny was able to put us in touch with a friend of his who agreed to meet us at the hospital today to translate for Miduk.  Her name is Kartika and she was absolutely wonderful.  I could sense that Miduk liked her and so did I.  Kartika and her husband moved to the Dallas area in 1999 from Surabaya on the island of Java in Indonesia so that he could get his MBA at UTA.  Kartika studied theology at University of Dallas.  They have a ten year old son so how perfect was that!  She communicated easily with Miduk and it was really neat to sit back and watch Miduk talk with her.  We had a long (ok really very long) wait today so we had plenty of time to ask Kartika to ask Miduk some questions.  She told us that he is very happy here and I was happy to hear that!  Miduk weighed in today at 80 pounds and I was just beaming!  Why is it that we mothers love it so much when our kids eat?  Our first appointment today was with Dr. Sucato, followed by an appointment with Dr. Birch.  And a handful of other doctors as well.  The exam room was full!  It is a teaching hospital after all.  With Kartika explaining everything to Miduk, Dr. Sucato explained that based on the results of the x-rays and ct scans done last time, that Miduk's bone age is roughly that of a 14 year old, and his growth plates are still open.  That's good news.  We were told that he could expect maybe two more years of growth.  Miduk's family are all small people so it is doubtful that he will grow a whole lot. The not so good news is that there are very few options to repair Miduk's hip.  We were told that the doctors there were in agreement that the only option for Miduk at this time is a surgery called hip fusion.  Basically they take the ball and put it back in the hip socket and then it is held in place with screws. The other option is to do nothing.  There are pros and cons to hip fusion surgery.  Because the hip is held in place permanently with the screws, he would have no hip rotation on that side. They would determine the angle at which to permanently attach the ball to the socket. This means he would be comfortable standing or lying down, but not sitting.  He would not be able to sit down in a chair (or anywhere) comfortably.He would be able to walk, but not "normally".  It is possible that he could run.  He would not have to use a crutch. The downside is that he would not be able to squat.  This could possibly prevent him from working as a farmer like the rest of his family.  It would also mean he could not squat to go to the bathroom.  In the U.S., we would use a special raised toilet in that situation.  But in his particular situation, toilets are not used and it is necessary that he be able to squat.  There are so very many things to consider!  Ultimately we want Miduk's hip to be healed, but in the process of trying to repair his hip we don't want to cause him more problems down the road.  At the present time he is not in very much pain, and he can get around pretty easily with the crutch.  Our concern is that after the hip fusion surgery, it is expected that over time he will experience pain in his knees and lower back.  The doctors said that most of the patients who elect to have hip fusion surgery are patients who cannot walk at all and are in so much pain they are on narcotics and this is their only chance to relieve the pain.  They also said that these same patients usually return in a few years and ask the doctors to do a hip replacement so that they have some hip mobility instead of a fused hip.  A hip replacement only lasts a certain amount of years (maybe 10 if I remember correctly) and then needs to be repeated.  Unfortunately this is not an option for Miduk.  This is his only chance for surgery. One chance.  So if hip fusion surgery leaves him with chronic pain in the future, we haven't helped him.  It might be great for a few years, but we have to look at it long-term.  He is only 16 years old and would outlive a hip replacement.  Then what?  So the question becomes, is the trade off worth it?  Shelby and I went into this telling ourselves that we would make the best decision for Miduk just like we would for our children. We are his legal guardians and will ultimately decide which route to take.  But the reality is, Miduk will return to Indonesia and to a future that is far different from what it would be in the U.S.  If it were Wes or Kasey, we could take a chance on surgery and then do it again later if necessary.  Unfortunately Miduk does not have that opportunity.  It was really heartbreaking to watch Miduk as he processed all this information. To realize that if he had been treated immediately after the injury occured, that it most likely could have been fixed.  The doctors asked if he had any questions, and he wanted to know if he had the surgery, would he be able to kick a soccer ball with that leg?  He would be able to bend the knee and kick , but not swing his leg from the hip and not swing it side to side. Bummer!  He wanted to know if he could still ride a bike after hip fusion surgery?  He says he loves to ride his bike at home (except that it is currently broken).  The answer was no bike riding and I don't think I will ever forget the look on his face.  At that point he buried his head in his hands and I lost it.  Seriously. This is a lot for a young boy to handle.  The doctors were extremely patient and gentle with Miduk, they told him there is a lot to think about and they want him to give it some thought.  They even offered to make him a "body cast" of sorts, something that would simulate how it would feel if he had the hip fusion done.  It would be custom made and fit around his torso and extend below his hip, and another piece to go from his hip to just above his knee.  This way he could feel just how limiting it would be.  At least he wouldn't return to his village with regrets over not having tried it out.  So, going on 5:00pm at this point, we headed to the guy who makes the casts.  He put a thin "sleeve" over Miduk's torso and hip/leg, and proceeded to wrap it and then cut it off.  It will take him about 3 weeks to make it, and he also is going to make an orthotic for his shoe just to further simulate how it might be after the surgery.  The plan is that Miduk will wear these casts all day long and see how it goes.  At this point we were all starving and Miduk was exhausted and slap happy, flexing his muscles and laughing at himself in the mirror.  :) 

  I asked Kartika to explain to Miduk that even if he does not have the surgery, that we are not going to put him on the next plane back home! I assured him that we want him to stay and have Christmas with us, and hopefully see some snow and enjoy the U.S. a little longer. I almost think he would say yes to the surgery just so he could stay here longer.  I also fear that he might be inclined to do the surgery because he said his parents told him to "come here and get well".  Miduk is a smart kid, and I think he understands everything.  It was most definitely helpful to have Kartika there translating everything for him in Bahasa.  She was amazing, and we couldn't have done it without her! I am so grateful that she was willing to spend her day at Scottish Rite!  Even though her mother is in town visiting from Indonesia!!!   We agreed to stay in touch.  :)

Stopped at IHOP on the way home to try and lift his spirits(waffles and sausage!).  He watched "Elf" again with Kasey and Zach and was laughing his head off!  We talked a little more when I went in to tell him goodnight, and agreed to pray about it and not worry and let God take care of everything.  Hakuna Matata!  No  worries!

And let me just apologize to all of you who called today to get an update and I wasn't able to take your call.  I just want to thank you all for your support and for your prayers for Miduk.  I really do appreciate it!

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