Monday, February 24, 2014

Just busy-- some medical stuff

That's us.  Just busy.  Nothing major.  Well, nothing we'd consider major.  I'll just start somewhere so you can be filled in on medical bits and pieces.  Alyona had another follow up.  they too suspect something is not quite right.  Long story short, could be a CSF leak or could be a stretched out tethered cord when they did the second surgery.  We're honestly hoping for neither and that symptoms are a fluke since she's somewhat of an "oddity" anyhow.  Alyona is now scheduled for a full spine MRI with contrast.  March 6th is that date and we will take it all from there.  Her orth surgeon at Duke coordinated w/ her neurosurgeon there.  Great they can work in tandem.  Oh, ortho also said she will most likely need her hand worked on.  Botched surgery job remnants.  But, one thing at a time for her.

Past Friday, Sofie fell.  If I had a nickel for every time I said "don't run on the couch or you're going to fall and crack your head!"  And yep, that's what happened.  Head to the corner of the coffee table.  Not a good match up.  That was my Valentines Day at Urgent Care.  They used glue on her instead of stitches.  No biggie.  All healed up already.  She just was happy to show everyone her battle scars.

Today, Nik, Bojan and Yana went to the eye doc.  Summer goes tomorrow.  Yana and Bojan's are normal.  This is fantastic as we learned recently that one of Bojan's bio sibs was dx'd with diabetes.  So, monitoring him closely as well.  Nik's vision actually improved for once!  In addition, this is the first time ever the doctor could understand him as he read out the letters. I was thrilled watching it all.  Nik's script only changed a bit but for the better.  Great news all around for that.   Summer had hers the next day and was fine as well.  Little farsighted but perfectly fine. 

Got to Nik's school today to drop him off.  Met up with his speech therapist.  We talked for awhile.  Okay, what I've kept quiet about for awhile now is we've been noticing things at home with Summer.  You all know she has quite a few brain disorders.  And I do mean quite a few.  Therapist confirmed what we suspected for awhile now.  Summer is regressing.  Yes, she's made progress but she's just not there in so many ways. Academics will always be hard for her.  We knew that going into it but still isn't always great to hear.  They said she'll need a self-contained room.  I don't have to remind you I'm the one that suggested that from the get go.  Summer has actually learned more this year though then we thought she would.  She's learned colors, how to count to 12, how to write her name, left from right and a few other things.  I can see though a plateau forming.  And forming in kindergarten is just NOT the time to plateau.  We wait for the plateau and always push as far as we can with our kids. Alyona plateaued a few years ago.  But Summer is leagues behind where even Alyona was years ago at the same grade.  Trying to make sense of it all.  I know being in Pleven did not help stimulate the brain at all and for c-ACC kids, that is critical in early development.  Yes, she gets service when she got home.  But, too little, too late?  We'll never know.  All I know, is we love her and will help her reach her fullest potential.  Just hearing she is regressing and that others are seeing it too, makes you think. 

Irina is having trouble breathing.  Years ago, she had lots of surgery on her nose.  Sinuses, deviated septum, etc.  Well, after surgery I warned doc NOT to give hefty duty pain meds due to her not being able to feel pain normally like you and I.  Surgeon looked at me like I grew two heads.  He gave it to her.  Sure enough, get home from surgery and she was dancing w/ Yana in her room.  Years ago this was.  Yana kicked her in the face accidentally.  Right in the nose after a major surgery.  Umm, yeh, she felt that one!  Doc said should be fine since splints were in it.  I truly think that is part of the problem today but who knows.  She has a hole between the two nostrils and now one side is completely closed off and the other is almost closed off.  It's terrible.  So, feel major rhinoplasty of some sort may be in her future.  Who knows.  Appointment is at the end of March. 

More on kids later.  Just trying to play catch up since it's been two weeks.

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