Friday, October 4, 2013

Alyona, post op

Since the surgery happenings and recovery is what has been keeping me a little side tracked lately, thought I'd start out with that stuff.  Alyona was released from the hospital last Saturday.  She had a terrible, terrible rash.  We are guessing from the taping of hte surgical pad.  thisis a little (VERY little mind you) of what was left of it a few days out.


When it was bad, it covered her whole back w/ red streaks down the side.  Is nuts when the itching hurts worse than the actual surgery itself.  She was a trooper though.  



Alyona put on a bathing suit for me so I could see her back.  That and it wouldn't itch so badly b/c nothing would be covering the rash then.  You can see here how she leans.  This was post- op.  The tethered cord did not address the scoliosis but sometimes, the cord surgery will help the scoliosis a little.

Poor kid can't even stand up straight.  It's now nearly impossible to.  This will be the next big issue to address.  Talked to several nurses while at Duke.  It's a long surgery.  She also said most are in there for a week!  I think we may go insane by a week.  Her scoliosis eval at Duke is Oct. 21st.  Her eval at Shriners is Dec. 3rd but they said they will be moving that up for sure.  

Alyona is still having headaches after surgery but not as frequent which is great.  It's the cerebral fluid trying to balance out I'm told.  Very happy the surgery went well.  ONly thing we have now is a swollen incision site. That just started.  Yesterday.  All in all though, she is healing and that's what counts.  Now, we wait for the scoliosis surgery.  

Got to go.  Taking the kids to a little carnival type thing tomorrow.  Busy day but hopefully a little fun thrown in there for good measure.  Enjoy your weekend.  more posts for sure.  Lots of catching up to do.  I won't be silent for long so watch out. 

Thursday, October 3, 2013

Where have you been?!

Started this yesterday & got interrupted.  You'll realize why I never finished in a minute. 

LOTS happening right now at Chaos Manor.  I will give you a brief run down of today as I'm waiting for a call from the hospital.  Started other posts but you'll see after this one why my life is going a little fast at the moment.  We all have these times, just take it step by step, medical issue by medical issue.  We will start with a call I got this afternoon from EMS.  Umm, never good when EMS is calling you at home!  Yana passed out at the track meet.  We didn't have any more details than that.  I was assuming dehydration or something of that sort.  Trouble was, she was refusing treatment.  Well, since now 18 (as of last week mind you!) they legally don't have to hold her.  I got on the phone and convinced her to go to the hospital for further eval as medic told me of trouble in the S-D wave.  I said call back if cardiac issue b/c that would mean transport to a different hospital as this is just a community one.  Called back, going to community hospital so actually felt better about all that.  Called Warren to go meet them there so that is where he is at.  Doing all the basics of blood work, EKG's, etc.  Her bp was elevated but she did just run so activity level was high.

Now, while this was happening, house guest was having a bit of a meltdown b/c I was outside talking to a friend who is also an EMS worker.  Trying to understand a bit more.  She gets upset if she thinks I'm leaving which is understandable.  What I failed to tell you is before this, Alex came home from school with an injured arm off the bus. He and a girl got into a play fight on the bus.  Trouble was, she hit him on the birth defect part of his arm that has the bone growing out of a bone.  In addition to this, house guest was wheezing. 

Alight, it is now Thursday so I can fill in a bit more of what happened.  First off, Yana is fine.  Dehydration and passing out.  Labs looked great, and cardiac settled itself out.  Finally figured out why they were keeping her longer.  See, Warren said they kept going in and out of hte room.  He asked is everything okay?  They said "Do you think she is okay?"  He said yes, she's fine, why?  "Do you think her speech is okay?"  Then it clicked with Warren.  He thinks they thought she was stroking out w/ the slurred speech.  He said oh, you do know she's got a Russian accent, right?  Nurses then said "oh."  And smiled.  Yana is our only child besides Logan that still retains an accent.  Put that on top of her CAPD and well, you have squirrel and moose.  Those old enough will know what that means.  Anyhow, they got home late.  This morning, Yana went to school w/ no running allowed for a bit.  Max went to ortho b/c all his joints have been hurting for some time now.  Turns out it is the muscles causing the joints to pop out of place.  PT order 2X a week for 6 weeks.  URGHH!!!  While Warren was there, I was at the school for Nik's nearly 3 hour IEP meeting.  Not fun, but not bad.  Me against 8.  We only disagreed on one thing.  One major thing.  More on all that later though.  Came home.  Exhausted.  It's Nik's birthday today.  He turned 11yo.  I will take cupcakes to his new class.  Ironically, his first day in self-contained and his teacher's last day in self-contained.  Lovely, another transition.  What the school doesn't get is how transitions affect FAS kids.  Their focus is and always has been on his deafness, not his FAS or autism as well.  All the dx's play a part as to who he is.  Again, separate post later.  Anyhow, Warren got home late and took in Alex for an x-ray.  He has a hairline fracture and referral to ortho.  Arm in a sling for now.  See, the birth defect is a bone growing out of a bone.  That little piece is what's broken.  Never dull. 

Tomorrow, I have a 504 plan meeting for Bojan to get him back on the regular bus since the wheelchair is needed no more.  I'm taking cupcakes to Nik's class in the afternoon.  Need to make them btw.  Bojan is getting his new leg tomorrow and prothetist is coming over for dinner as well.  This my friends is only a little of what's going on.  Alyona is still getting headaches.  Cerebral fluid not quite balanced out yet.  We have had one thing after another happen here.  I know Nik is going to need to go to the doc at some point as well. 

I have never wanted a weekend to come so fast in my life.  LOL.  We are going to a special needs carnival on Saturday.  Should be a lot of fun.  Younger kids going with us.  Max hanging out with a friend this weekend.  Same with Yana and Bojan.  Not sure what Irina is up to.  I'm also watching a friend's kids on Saturday (they'll go w/ us to the carnival) while she moves into a new house.  Honestly, this week just has been insane.  This weekend we are hoping to catch our breaths somewhat and have fun with the kids.  There are many activities on the docket for October so we are ready to have some fun.  We'll be going to Camp Woodbine for a day camp of fun, going camping, going to a carnival, going to  the park, going to a pumpkin patch, and going to a few more places for sure.  Glad that everything seemed to happen this week and hopefully the worst is behind us.  We didn't disappear.  Just life with the kids took over.  And I've always said on here they come before the blog.  There are so many posts and pictures waiting to be finished.  I"ll get there.  So, this is where I've been.