Monday, September 15, 2014

Alyona's Appointment-- lots to say

Okay, so Alyona had her scoliosis follow up appointment at Duke.  Hasn't been quite a year yet.  Doing fantastic and still straight!  That being said, the arm still has what we all thought was a cyst on it.  Ganglion cyst.  Well, after a little light trick, doc thinks it is a tumor, not a cyst but is also not concerned.  Said we can get the surgery any time.  Surgery is only about an hour and in a cast for three weeks.  compared to surgeries past, this is a cake walk.  So, as soon as Little Guy's medical issues are taken care of, the surgery will come for Alyona.  Doc agrees.  This is not a necessary surgery but since we're wrapping it everyday and it is bothering her, we all agreed better to take it out.  Doc stressed no rush like her others were.  Hence, why we're taking care of her brother first.  So, all in all, great news from Duke regarding Alyona's surgery from last year.  She is to be followed two years after surgery and then will be cleared.  Hasn't even been a year yet. 

Now, while there, we had some of the ortho team take a look at Little Guy.  You know, off the cuff.  Actually, they came to us and said "who's the new one?"  Since he has an appointment in two weeks anyhow, we got to talking.  The nurse made sure we were being seen on a clinic day as PT thinks he'll benefit from a walker.  And, if he needs AFO's, we can do it while there possibly though I'd prefer we stick to our guy that Bojan goes to already.  Not that Duke can't do it but convenience wise, it is just easier on us being closer.  Our doc also had a few things to say about his syndrome.  He will always indeed be on the skinny side.  That is normal.  His kyphosis scoliosis we'll get checked out too but at the moment, is not as bad as what it could be.  Our doc also already put in a genetic consult request and will speak w/ doc personally he said.  He has one other patient w/ this syndrome.  A rare one so not writing it on here as of yet due to identifying info and pending adoption status.  I just have to say I was pleased that everyone there was willing to go above and beyond to help our son.  They also know neurosurgery is going to be a must, not just neurology.  We had a feeling.  I am just very pleased that things are moving along and we'll have answers to a few questions in the next few weeks. 

We then went to pick up Max who hung out w/ a friend all weekend at his place.  Max also got to go to one of the local colleges and attend an architechtural class to see if he was interested in it.  Nice they let him go and only 7 students in that class!  Unreal.  Max enjoyed it and expressed an interest in going to school now so looking into things at the moment.  For now, he is working and doing his art.  So, busy day for us.  Tomorrow is Spanish class for some of the kids.  Rest of the day, school.  More posts to come.  Getting there. 

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