Tuesday, February 21, 2012

2 surgeries due

Yep, those were today's results.  Okay, first Alyona.  She is getting her hardware all removed which we somewhat expected.  Cast for a few weeks.  Remember, due to her FASD, failure to thrive, delayed bone growth, etc. she is extremely slow to heal in the bones.  Hoping this time it will be different. 

Next is Bojan.  More complicated.  They are not amputating.  They will be cutting the bone, realigning the foot, taking out hardware and a few other things.  This doctor seems to think he can fix what the previous doctor messed up years ago.  He said the previous doc did not take into account the growth Bojan would be experiencing as a normal growing child.  And yes, he's really shot up this year.  He will be wheelchair bound for 6 to 8 weeks.  Then, on a walker or crutches.  Bojan will have to sleep downstairs.  Our doorways are NOT wheelchair accessible.  Makes it hard when Bojan gets his surgeries.  Anyhow, we are hoping to get these down quickly so that he can heal in time for vacation and enjoy it.  We'll see though.  This is going to be a very rough surgery.  Sawing bone is not easy.  Cast, all the way up.  Bojan is typically a fast healer.  Hoping so.  He's just ready to have it fixed. 

Now, Duke has to call us to schedule the surgeries.  Hoping they call this week so we can set it all up.  Irina's appointment is the 13th.  We'll know then when her surgery will be.  Chances are, she'll need it.  Hey, knock em out all at once I say.  LOL.  Waiting to hear from a neuro-ophthalmologist I called for Summer as c-ACC kids are more susceptible to ONH & SOD.  Okay either way.  Very familiar as Alyona has ONH and they thought Nik had SOD.  I think she's fine though but we'll find out to be on the safe side.   Endo is the big appointment for her and one that I may be a little nervous for. 

Warren does not want to do the surgeries at once.  I would prefer it but then again, last time we did that, Alyona's went horribly wrong.  It was a nightmare and having two out at once was beyond difficult.  Seeing what they say at Duke. 

This afternoon, we took Nik to Castle to get new head pieces for his implants.  Poor kid wants Neptunes SO badly and I want them for him.  I asked today.  Insurance will not pay for upgrades.   I asked about trade-ins and need to call Advance Bionics.  Doing it tomorrow.  If we could get a decent amount for the trade-ins, maybe we could swing the new neptunes, somehow, some way.  See, the Neptunes are implants that are waterproof.  He could swim in them, not worry about being outside in the rain, not be scared when we come in the bathroom to get him out of the shower, not worry about sweating in them.  Let's face it, Nik is an outdoors kind of kid.  This would be almost vital at this point especially since he's getting older.  He's outside more.  He asks me all the time about the Neptunes.  I'm wondering if I could do some type of fundraiser.  who knows.  It's not like the kid has asked for some video gaming system or something frivolous. He's asked us to help him improve his quality of life.  Bottom line.  Time will tell.  Just keeping hoping that a trade-in is allowed.  And not like a $15 trade-in type thing. LOL.  I'll let everyone know to be sure as others may be interested.  Advanced Bionics has been nothing but helpful and prompt w/ all Nik's repair.  Their implants are very durable so really hoping that the Neptunes can be obtained.  Hey, I'm sure Nik would be happy to be a spokes person.  He asks me every dog gone day about those things. 

Someone dropped off a bag of clothes for the girls.  Alyona & Reni have been having their own little fashion show.  Love it.  Would love to thank the person but have no way of knowing who it was.  If you're reading this, thank you a bunch!  The girls look so cute and really have enjoyed the clothes. 

Pulling Irina from school Friday.  She already has a job lined up.  Wahoo!!!  Yana is doing a track fundraiser so she can get a uniform.  Apparently, they cost a couple hundred dollars.  Now, I'm not into the clothing business but I am a bargain hunter.  I can guarantee you I could find the school a MUCH better deal on uniforms than a couple hundred bucks a pop!  That's crazy.  We even have athletic outlets in a very nearby town (15 minutes away) that does clothing.  Just saying I think they need to look at budgets better is all.   Anyhow, they are to purchase if they can't raise the money.  We would not have had it.  But, she only had to sell 10 cookie orders.  However, she already did that in 2 days!  Very proud of that.  She went out and sold.  So, a relief she has a uniform.  And, she beat her time today. 

More to tell but dinner awaits.  3 posts in one day.  I'm working on getting caught up.  If I have not written you back yet, trust me, I'm getting to it.  There is a lot going on here and too much to write about for sure.  Need some more picture posts. 


  1. heatherruark@aol.comFebruary 21, 2012 at 9:42 PM

    How much would the Neptune processor cost?

  2. I'm not sure if you know but Lion's Club sometimes will help pay for things like this. I know there's another organization that also helps pay but I can't think of it at the top of my head right now. My hubby has cochlear implants and they paid the difference after insurance paid. Wouldn't hurt to send an application in?

  3. I was talking to my 13 yr old about Bojan's desire for an amputation and the doctor's decision to try to fix his foot with surgery... We were wondering which recovery time would be faster and what led you to follow the doctor's desire over Bojan's?

  4. I am thinking the same thing DE is. The amputation should be Bohan's choice. He's at an age that he's aware of what am amputation would mean for him. Having had an amputation myself, I can say that his recovery would be quicker than the surgery. He's worn a prosthetic leg, so he knows how that works. I would try to discuss it and do some research with Bojan. Print out what you find and take it to the surgeon. If they know that he knows about amputations and what it will entail for the rest of his life, then they are more likely to listen. I hope it all goes well!