Monday, October 21, 2013

Alyona's Scoliosis Appointment

Today we went to Duke.  Love the doc there that has worked with us.  The news today isn't all we wanted to hear.  Remember  awhile back when they told us the tethered cord surgery may make the scoliosis better?  Umm, yeh, that didn't work.  In fact, got quite a bit worse. I think before it was around a 46% curve.  Now, it's 61.2%.  Great news, it is NOT life threatening at this time.  Now, surgery obviously has to take place.  No exceptions.  They will use at least 18 screws, 2 hooks, and titanium rods.  Have to have titanium b/c w/ her tethered cord, future MRI's are likely.  Surgery will be at least 6 hours.  Recovery of feeling crummy, around 2 weeks.  Limited activity for much, much longer.  He said this is much more difficult than the tethered cord surgery she just had done.  He told us this will be a rough one.  Nurses told me it is a brutal surgery.  Their words, not mine.  nurses told me expect at least a week stay even though surgeon says 5 days. 

So, we got our new insurance info today and all the changes that will be taking place.  For a family like ours w/ multiple children w/ disabilities, it will have a profound affect on us and not all that great.  We are still getting details, still reading like crazy but not liking it.  It is what it is.  I won't get into political discussions on all this but most know where I sort of stand politically.  Healthcare debate is in the news enough.  Won't give it more publicity.  I'll just leave it at I'm not a fan and move on.

Back to Alyona.  Surgeon is booked.  We were all scrambling to find something available. Something 'may' come open on Dec. 3rd but not banking on it.  So, that leaves us w/ two possibilities.  Dec. 24th and Dec. 27th.  Possibilities.  Right now, the plan is for Dec. 27th.  If that falls through, we will have Christmas in the hospital.  Hope not.  So, Irina's birthday it is.  In addition to this, there are more medical happenings taking place.  Sofie will get a sedated MRI at some point soon.  Bojan will get new leg parts. Other leg is almost finished.  Nik will hopefully get his new implants, and house guest is outgrowing some AFO's.  So, medical stuff is happening around here.  Busy time but we'll all get through it one step at a time. 

We have never been more happy to get away this weekend and go camping.  Kids are VERY excited and little kids want to keep putting stuff in the 'bus.'  What they call the RV.  So tomorrow will be filled w/ phone calls galore but after that, it's all Halloween costume planning and making.  We're ready for some FUN this weekend!  Just wanted to share Alyona will indeed be getting surgery.  For now, scheduled for Dec. 27th.  We were originally going to get a second opinion at Shriners but we really like this surgeon and feel very confident w/ our decision to do it at Duke.  I'll update more as we here more.  If an opening becomes available, surgery could be much sooner.   We told him we'd be flexible.  Much more to come.  Just wanted to let you all know about Alyona.  She's ready b/c she wants to be taller.  LOL. 

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