Monday, August 19, 2013

Alyona's MRI results

As you know by now, we have 7 children with FAS.  Alyona is one of them.  Many things can be affected by alcohol when pregnant.  Especially in regards to development of thing.  Alyona came home from vacation this summer.  About two weeks later, girls came to me and said look at this mom.  Showed me Alyona's back.  Won't show the pics on here b/c does she her bra straps and well, any teen would be mad.  But, needed pics to show doc.  Anyhow, she was seen, that day and dx'd sudden onset scoliosis.  In addition, her stomach did not react and her curve was to the left.  Indicators which meant there was some pathology behind all this.  Not good.  Still, hoping it was nothing and appt. w/ Duke Ortho was scheduled.  Went.  Then, MRI scheduled for this past Friday evening.  Now, Warren and I have gotten a bit better at reading lips since having Nik.  He could not only read the techs' facial expressions but also what they were saying "What's that?!  I don't know?  Weird."  So we knew we'd most likely get a call and maybe at least a dx. 

Today, at 7 something this morning, I get a call from the nurse at Duke.  She said I didn't want you to be alarmed when neurosurgery called you today.  Umm, okay.  She said at this point, scoliosis takes a back seat to neurosurgery.  Alyona has a tethered  cord.  You'll have a consult w/ neurosurgery and then surgery.  This may or may not be causing the scoliosis she added.  Lovely, a new turn of events.  We do not know the details of the tethered cord.  we're waiting for the consult to find out the details and what all is involved w/ hers.  Not the news we wanted to hear but we go with the flow here.  By the sounds of it, surgery will be sooner rather than later.  After she recovers, then we go for the scoliosis surgery. 

With this new info in hand, we  have decided not to enroll Alyona back into school.  It was questionable if she could handle it to begin with just given the sheer #of people and banging around she'd experience.   This confirmed it.  We have to do what is in the best interest of the kids and we feel this is the right decision.  If she stayed in school, she'd just get homebound services anyhow which is only 2 hours a week.  Not worth it. 

I'm glad Max had his surgery on his shoulder.  Glad Bojan is on the mends w/ the amputation surgery.  Now, we can focus on Alyona's upcoming two surgeries.  She'll do fine.  Though a shocker initially, Alyona will be better off with all this fixed.  I know this is progressive.  It was caught we do believe in time.  And to think, at first Duke wasn't sure if they needed to even do an MRI.  Glad we insisted and they concurred.  Thanks for thinking of Alyona.  I will keep you posted as things progress.  The next few weeks may end up being rather hectic we have a feeling.  Time will tell.

1 comment:

  1. Wow when it rains it pour in your house! Hope she recovers quickly from both surgeries.