Wednesday, September 11, 2013

Neurosurgery Appointment at Duke Today

I  know I haven't written on here since Saturday but truly have barely had time to breathe lately.  I'll explain in the next few posts.  This is all about today's appointments.  First, we had to go to Neurology for Little One.  This is to establish her w/ our developmental ped/ neurologists.  We've been going there since Irina & Max came home in '99.  So yes, they know us and the kids very well.  They listen and take suggestions as well.  Love that.  Anyhow, came away  basically w/ what we thought would happen.  We need speech and OT.  Already knew that.  She has FAS.  Already knew that as well.  At some point, she'll be getting an MRI.  This is common for our kids.  I have quite a few with abnormalities of the brain and the MRI's can pin point these things.  Summer is a prime example of what an MRI can catch as well as Alyona.  We took the three younger ones w/ us to this appointment.  They all got lollipops so they were good.  Oh, and since Little One got her bp measure, height, weight, gait, etc., the other two just had to do it as well.  Our doc obliged. 

After that appointment, we went to Warren's work and had lunch.  They have on site cafeterias there.  Girls thought it was cool there was a soda fountain at Daddy's work.  I enjoyed a salad & some pizza and Warren got sushi.  Girls had pizza as well.  Met some of Warren's co-workers and unfortunately could not stay long as had to get to Duke Neurosurgery in time.  Off we went.  Girls fell asleep on the way.  Very short nap.  Too short.  Got there a little after 1pm.  Appointment time was at 1pm. 

Got to the waiting room and one couple had been there since 11am!  That was their appointment time originally.  Yikes!  Told you all Duke was super slow.  Not one appointment at Duke has ever been on time.  Not one.  Finally got back to be seen.  Long story short, doc came in.  Went over MRI results and what they discovered. Tethered cord and scoliosis.  And they think Klippel-Feil Syndrome.  That one was a surprise.  But, he doesn't seem as concerned w/ that.  Her cervical vertebrae are fused.  2 of them.  Anyhow, back to the tethered cord deal.  Great news is out of all the scenarios, this is one of the better ones and more simpler to fix!  Wahoo!!!!  Now, the deal is though, since she is currently not showing symptoms of incontinence or losing the ability to walk, we are in a very good position to fix this w/out those things becoming permanent.  They know it is only a matter of time before symptoms appear.  So, extremely critical this is fixed immediately.  They scheduled surgery and pre-op right then and there.  First available which is September 25th.  She'll be hospitalized for 4 days.  Recovery will be a few weeks at home then.  The fantastic news is this is repairable.  After a month after surgery, she will then go back to ortho for treatment and surgery of the scoliosis.  Going to be an interesting few months, huh?  Alyona is obviously nervous.  Once closer, I may ask if those who want to send cards to do so.  This will not only be tough on Alyona but on some of the other kids as well.  Praying for a great outcome and her pain to go away.  Right now, she's on pain management.  It has been hard for Alyona.  This should bring some relief to her. 

Came home and speech therapist was here.  Did that and Yana got home from her cross country meet.  Her time slowed since last year but it's been a year since she ran.  She is determined to get back into the groove so to speak.  And Max may have just broken a few of Warren's toes w/ his steel toed boots.  Ouch!  It was an accident.  Never dull here you know.  I do have to get going.  Just wanted a brief update.  I'll explain more why we've been so busy but appointments and school is most of it.  Much, much more to come along w/ pictures that I'm way behind on. 

1 comment:

  1. Wish I'd gotten to see you while you were here.