Friday, August 17, 2012

More about Bojan's leg

Yesterday was a busy day.  After cardiology, there was voc. rehab and then prosthetics for Bojan.  Bojan was supposed to get fitted for a new socket.  However, he has grown so fast, he had to be fitted for a new liner.  After the new liner comes in, he'll be casted for a new socket.  Then, check socket gets here and the final one comes in.  It's a process.  We're used to it and no big deal.  While there, we also found his running leg we kind of forgot about.  Well, not really forgot about but thought he outgrew it.  Our guy is going to check on the weight limit for it and get it all organized for Bojan to wear again.  That will be awesome! 

Bojan's old running leg that we're going to be using again for sure.  Warren put the tread on that one from an old lawn mower tire.  It grips better that way for him.  B/c of Bojan's other clubfoot, he wears one side down more so having the thick tread helped.  Our prosthetist thought that was a great idea.  He and Warren brain storm every time they get together.  

Nik, messing w/ some of the models on the table.  Thank goodness they have durable goods here.  LOL.  

What better things to do than mess w/ the gloves in the office.

Nik and Bojan goofing off.  We took Nik w/ us b/c of his umm, party peddling in the street.  I'll have to write about that one later.  

Nik looks like he just got caught in this picture.

Nik's art work.  Nik and Mom are fighting.  Nice kid.  Notice, he's bigger than me?  Apparently, I also somehow hurt him as the kid standing next to us is him as well....w/ a prosthetic leg b/c he needed surgery.  Ahh, my little Stephen King still.  

Bojan is the big scary monster in this picture.  He draws these things and than laughs.  I do believe he does it to get more of a reaction from us.  

This is the guy who's kept Bojan walking all these years.  He's awesome.  

Frank is going to work on Bojan's leg these next few weeks.  Bojan will need all new componentry as well. He's just growing too fast.  Ahh, apparently we DO feed our kids CPS.  Sorry, that was mean.  Umm, no it wasn't.  Yes, I'm still bitter about the whole thing.  Those who've lived a similar situation totally get that statement.  

Frank has also told us to let Duke call him on Tuesday if need be.  Bojan has an appointment w/ Duke regarding his recent surgery that doesn't seem to have fixed the clubfoot but made it worse.  Much worse.  Bojan is in constant pain.  His foot turns purple.  It's numb when he stands on it.  Clearly, there is a circulation problem here.  His ped agrees, his prosthetist agrees, etc.  Major issue here.  It may seem drastic to ampuate the foot.  However, Bojan has begged for this for 2 years now.  He has a right to not live in pain any more.  He's done w/ surgeries.  Done w/the promises of it will be better next time.  I don't blame him.  Yes, we will go over our options.  We've been to different surgeons over the years and it's the same old story.  I can make it better.  I can fix it.  I, I, I.  Sometimes I think it is more of what they're trying to prove than what is ultimately in the best interest of the patient.  And I think after giving it 7, almost 8 straight years, we've allowed plenty of time to make the various surgeries work and they haven't.  Each time, they've made it a little worse for Bojan.  We're now into the quality of his life and doing what is in HIS best interest.  Not the docs.  I kind of think Duke will down play this on Tuesday.  I hope not.  I hope they see other options.  We've told Bojan to be assertive at what he wants.  Doc needs to see he is ready.  Being that there are two other professionals who are feeling the same way we are and both who've known Bojan since he's come home, I think may have some barring.  I don't want Duke to think this is just some rash decision parents are contemplating.  That is NOT IT AT ALL.  This is not an easy decision at all but one that has much, much thought put into it.  And, if Duke comes back w/ some miraculous way to fix it (highly doubt it), then we'll look into it.  But at 13yo, you should not be having circulation problems the way he is.  Next week should tell a lot.  I'm hopeful.  Lots of big decisions soon I'm sure.  Bojan is totally ready for whatever may come his way though he is wanting amputation.  I told him it depends on what everyone says.  Other opinions may be in order this go around.  May go to UNC for a second opinion too.  Not sure at this point.  Tuesday we'll know more.  Just thought I'd share.

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