Saturday, December 21, 2013

Blessings Abound!

This Christmas Season our family has been blessed beyond measure.  The kindness and generosity of others has been overwhelming at times.  Recently, we've been having people offer meals to us during surgery week.  We've had friends offer to watch the kids when we weren't going to be here.  We've had a few "Santas."  We've also received 6 cases of organic fruit & veggies!  We've had friends come over just to chat.  Just been awesome to witness it all.


All this food was made by just one dear lady.  A friend's mom made ALL this!  Thank you Cathy!


Desserts like crazy.   There was no such thing as a bad dessert in this one.


Such variety.  Cookies and candies galore.  Beautiful and all layers upon layers of goodies.


Two full pans of stuffed shells.  Yum!  Yum!


I do not know how she made these spinach balls but I confess I ate most of them.  Delicious.  And meatballs too!  Kids were in heaven and I was so grateful for not having to cook that night.


Another friend brought chicken enchiladas so that we can make them during our surgery week.  How thoughtful was that?!  Thank you Katie!  

We can not wait to have the opportunity to pay this forward one day.  Just an awesome feeling of relief when things are a little hectic to have the extra help to make it run smoothly.  And all our friends seem to know exactly what we need and when we need it.  Just had to share. 

Where have you been?

Umm, in survival mode.  LOL.  We have had a bunch going on lately.  Schools had parties last week and well, last just say I'm not superwoman and more than one epic fail on my part.  Used to go to school and you had a Christmas party the last day of school.  One party, small, and just fun.  Now, you have festivities spread amongst the week to remember, tons of stuff to bring in and can't call it a Christmas Party.  Nope, it's a winter celebration.  Geez, times have changed!  Why bring Santa in if it's not a Christmas Party?  Bring in the snow maiden then. 

I digress.  So, had to remember books for a book exchange, cookies, ornaments for an ornament exchange, pajamas for pajama day, hot cocoa for Polar Express stuff, napkins and paper products for parties and who knows what else.  Oh, and throw in that mix cupcakes and soda for a party for Summer's Birthday too.  And remember, I watch a little boy during the day too and have Alyona who can't really lift anything right now & who's pain is getting worse.  Forgot the stroller.  Epic Fail #1.  So, I'm trying to enlist the help of two small toddlers to carry stuff w/out smashing cupcakes.  Yeh, it was nuts.  And there must have been at least a dozen people pass me.  Maybe they thought I had it together.  I don't know.  So, after stopping at least thirty times, we made it.  Got to school and realized I needed to make cookies for Nik's class for Friday.  Thursday at midnight we're making stupid chocolate chips and they are burned on the bottom and raw in the middle.  Epic Fail #2.  Warren runs to Dollar General to get Chips Ahoy.  Why the heck we didn't do that to begin with, I'll never know.  Ornaments.  Needed them.  got those on Thursday b/c I didn't have any.  Realized just today we actually DID  have other ornaments we had picked up the previous week but totally forgot about them.  This was the way my entire week went and so hence, the neglected blog posts.

Friday, we went to take Reni to our ENT.  And another surgery is now scheduled for....wait for it....wait for it......Christmas Eve!  Yeppers.  Wrote this on FB and just copying and pasting. 

Let's see what happened at Chaos Manor now. Let me get this straight.
  1. Dec. 23rd-- Warren pre-op/ Reni pre-op
    Dec. 24th-- Reni tonsillectomy (yeh, that's a new one as of now!
    Dec. 25th-- Christmas
    Dec. 27th-- Alyona's surgery & mom stays in hospital w/ her next few days
    Dec. 29th-- Warren might come visit Duke w/ some of the kids so they can see Mom and Alyona
    Dec. 30th-- Warren goes in for surgery w/ possible overnight
    Dec. 31st-- May or may not come home from Duke/ Warren may be coming home this day and it's New Year's Eve

    So, busy, busy. I will say this, I am eternally grateful for the people that have helped us out w/ Christmas and other things this week. You all know who you are! We seriously could not have done it w/out you. As of right now, we have meals as follows (b/c many are asking when we need help & how w/ both parents being gone or out of it for a few days):

    Dec. 27th-- pizza
    Dec. 28th-- lasagna
    Dec. 29th-- cereal
    Dec. 30th-- spaghetti
    Dec. 31st-- Chicken enchiladas
     
    Rest of the time I'm hoping I can cook between patients. LOL. I have two friends who've volunteered to come and check on the kids while I'm gone & Warren is gone and can't do anything when home. As of now, I think Warren's dad is taking him to and from hospital if it is same day. If not same day, Jennifer will pick him up the next day. Now, I think I have it all right. If you are still asking can we use help? I will not turn it down if you offer right now b/c today we got that third surgery thrown our way in just 4 days and let's just say Mom & Dad are pretty behind on things around the house, for Christmas, etc. If anyone dare complains of a boring day on Facebook, I may have to have it out with them. LOL. Wish us luck. And after all this is over, the sign is going in the yard to sell the house. Can I please go to bed the next few days?
     
    Now, on top of all this, we got a call from Irina while we were out Christmas shopping saying Alex has a fever of 100.  not high at all for Alex.  He's one of our ones that runs high when he gets a fever.  As in 104/105.  So, wasn't concerned.  He's eating still and as of this evening, no fever.  Praying it's a 24 hour thing but deep down, think it's strep for him.  Time will tell.  IF he has a fever tomorrow, must take him in at least to get the antibiotic script for "stand by" b/c we won't be available w/ all the surgeries.  We have only ever done this ONE time before and swore I'd never do it again.  And that time was only Alyona and Bojan at the same time.  And not during the holidays and not w/ another parent out of commission.  But, Alyona ended up w/ a botched surgery job done at Wakemed and things went downhill that time.  Long story some of you may recall.  Anyhow, we're up for the challenge.  Just critical at this point, none of the rest of us get sick.  Suggestions for occupation for the others at home is welcomed.  Not worried.  Taking it one day at a time.  Normally, this would not all be scheduled at the same time.  But, it is for a reason.  2014 is to be surgery free!  Medically free too.  Ha!  Not w/ these kiddos. Really though, we are fortunate to have relatively healthy kids most the time.  We're going w/ the flow here.  So, this is part of the reason I've been busy and blog neglecting.  Won't even get into the deal of getting Bojan his new legs and Nik new implants.  Wahoo!  we're going to make it this coming week and be better for it.  And, knowing Alyona will be out of pain in a few weeks is reassuring.  More picture posts to come and what's happening to Chaos Manor.

Tuesday, December 17, 2013

Meadow Lights

Every year, we take the kids to Meadow Lights.  It's a tradition here and we drag them all with us.  Young and old alike.  And, one of Yana's friends got drug along as well simply b/c he was at the house at the time.  hey, we make no exceptions.  LOL.  It was sort of an impromptu decision just b/c we knew the following week would be too hectic to go.


This was a day where Sofie hadn't taken a nap.  Can you tell?


Nik beyond excited waiting for the train to arrive.


Our three youngest checking out the lights.


The girls of course wanted their picture taken.


And Summer mad she didn't get in w/ the first group of girls so wanted me to take it again.


Safe to say Nik loves his little sister.


The lights are beautiful.  Really are.  Better in person as a camera can't capture it.


And of course we had to see Santa.  Or as Sofie calls him 'Ho, Ho, Ho.'  Yet, she's still scared of him.  Likes to high 5 him and move on w/ the candy.  You're not allowed to take pics inside unless you are buying them.

 I just think Alex looks so much older here.  And no, Summer's coat is not small.  Goofball pulled her sleeves all the way down of her sweatshirt underneath. 


So, we were trying to line people up to get a picture of them all together.


Umm, yeh.  That's not working so well, is it?


No one is missing.  Alyona is hidden behind Sofie.  Notice her legs?  LOL.  Hey, all I can say is we tried and older kids amused us for the most part.


And, the main reason we all come here anyhow...the candy!  Of course.  Only part of the old fashioned candy store.  We go every year.  And yes, eat some on the way home.  Go home, and watch Christmas movies.  

We were supposed to go to the Christmas Parade this past weekend but the down pours got the better of us.  Each year, we do a few things for Christmas that have become little traditions I would say.  Hope we can keep some years to come and one day, take our grand kids here.  Right?  We're done w/ kids, kids, aren't we??  I'm waiting for Warren to come screaming upstairs.  LOL.  Anyhow, great time at Meadow Lights other than some little teen attitude in the beginning.  Pleasant time and that's what we shoot for.  More to come but need to head to bed.  Guess I need to explain soon what's going to be happening w/ Chaos Manor.

Monday, December 16, 2013

Upcoming Surgeries

As you know, the end of December we have a few surgical happenings in here.  Warren will be getting surgery on Dec. 30th at Rex.  His is outpatient w/ observation.  Meaning, if they need to keep him over night, they will.  Some patients they do, some they don't.  Also, sometimes it depends on just how late the surgeries are running that day.  So many hours to clear them and all that stuff.  So, he will be in one hospital getting surgery and I will be in another with Alyona.

Alyona will be having scoliosis surgery on December 27th.  It is a 6 to 8 hour surgery for her we're being told.  Long day.  Alyona will be having her surgery at Duke.  Her stay is scheduled to be 4 to 5 over nights.  However, last time staff nurses told me the majority of their scoliosis surgical patients don't leave until a week out.

This past week, Alyona had her pre-ops.  One is where they do all the blood work, x-rays, etc.  The other is at the neurodiagnositcs lab and they do testing of the nerves so they have a baseline for surgery.  Guessing so as not to paralyze her and things of that nature.  I will say Duke has a fantastic team.  Just their scheduling department has MUCH to be desired. I can never reach someone when I need to.  Remember me trying to get a hold of someone after her tethered cord surgery?  Other than that though, fantastic teams and they know their stuff.  Anyhow, they did Alyona's work up and sent her home w/ all the necessary stuff and then some.  Also samples of various tapes used so we can figure out how to prevent the next reaction.  So, we're on our way to getting stuff done w/ surgery.  We are going to use the blood bank blood.  Did not have time to bank her blood for surgery. Plus, that one was a new thing for us.  When they call you and say "well didn't the doctor call you?"  Umm, no.  Think I would have remembered that one!  Plus you have to do it 10 days before surgery and the place here told me they ONLY collect on Thursdays.  Even asked if we could go to another lab and they said no, has got to be the red cross one.  So, didn't work out.  Thankful there are donors out there. Please, keep donating.  Haven't been for awhile and I know the next time, I definitely will be going.  Makes you realize the importance of it when you're thrown into it.  My blood will not help Alyona this time but somewhere out there, it will help someone.  And that's my PSA...donate blood when you can please!  It CAN save a life.  (and helps greatly w/ surgeries)

So, busy after Christmas time.  We have friends trying to coordinate a few meals and childcare here and there.  Kids will obviously be out of school then.  Alyona's surgery is on Irina's birthday.  Some things can't be helped.  We want her to feel special. She turns 21.  With so close after Christmas it doesn't always seem that way.  I'm disappointed I won't be able to be with Warren during surgery. But, also know he's in good hands, has rides to and from and will be okay.  Alyona will need a lot of care and support to be sure.  We'll be on the 5th floor again, I'm sure.  We'll be there for New Year's Eve.  Once we get closer to the day, I'll give more details.  Last time, Alyona enjoyed getting the cards and messages.  Duke has it where you Can send quick email messages and they send them to the rooms via form of papers/ cards.  Very nice.  Last time she also received some gifts while there and that lit her up.  Especially, the chocolate.  We would unwrap 1 little candy after each meal as our treat.  Did we ever mention how horrible hospital food was?!  See, last surgery I wrote on Facebook w/ pics.  I didn't write on here much.  Let's face it, focus is on your child unless they're sleeping.  FB was the way to go then.  Not sure how it will be this go around.  We're just going to go with the flow.  No big deal.

Busy getting things lined up.  Trying to remain calm and not panic.  That's key.  We have wonderful friends and family willing to help us out.  Huge blessing to be sure.  More on surgeries later.  I highly doubt Reni will be able to get hers this year.  Stinks b/c due to health care changes (don't even get me started on this!), we will be losing surgical coverage.  It's being cut so will no longer be covered 100% starting in January 2014.  Real hard to bite my tongue but I swore I'd leave politics out of this blog so I am.  Our coverage will not be as it was and for that, I'm disappointed.  Will take time for me to get used to things.  January is almost here.  Guess jumping in both feet first is what has to be done. 

Manic Monday

And that it is.  Not too bad though.  Tell you a little of what's happening this week.

  • Christmas shopping not done yet
  • Partial Christmas cards went out due to accident w/ a cup left on table.  URGHH!!
  • Speech therapy this week
  • Bojan's concert this week
  • Bojan's new leg ordered
  • Nik's new Nadia CI's have been ordered
  • Irina has an ear infection
  • Irina lost 8 lbs. thus far (just had a checkup-- always do them around b-days so I can remember from year to year) and her bp is normal.  Way to go!
  • Reni feels SO much better than last week
  • Summer's b-day is this week
  • Early release on Friday.  
  • Last week of school for the year
  • Contemplating pulling quite a few out for homeschooling in January
  • House going on the market
  • Plan on building our own home (anyone want to guess # of bedrooms  LOL)
  • Need to bake cookies
  • Need to figure out teacher gifts
Well, too much to do to write a whole long list here.  You get the idea.  It's Christmas time.  Much more to come on what's all happening at Chaos Manor.  For now, got to get back to Alyona for school while the tots are still asleep.

Sunday, December 15, 2013

Sugery w/ these two??

Yes, I'd be a little nervous too.  The other day, Alyona had pre-op.  2 appointments actually but more on that later.  They give the kids all sorts of stuff to play w/ to get comfortable.  Of course Alyona brings it home.  Kids had a field day w/ it. 


Introducing Dr. Nik and Dr. Summer.  All ready to get to work.  And the first patient is...


Sofie.  Believe it or not, she was a willing participant.


They are just sewing her up according to the doctors.  And no, she is NOT screaming, she's laughing her behind off.  Guess she wasn't given enough anesthesia.  LOL.


Oh no!  They forgot to scrub down the patient.  Look how dirty her face is.  LOL.  And yes, she IS potty trained during the day but at night before bed we make her wear the pull ups to bed.   Kids thought it was cool they even got electrodes to put on her.  Alyona's hand has an X on it.  That's where they showed her at Duke earlier where the IV was going to go in.  Thank goodness that equipment wasn't sent home too.  BTW, this little girlie is now 30 lbs.  Crazy how fast they grow.


Chair is upstairs b/c had to move it w/ the Christmas Tree in the living room.  Patient is being moved to another room.  You know, b/c there are bunk beds there.  Max originally came upstairs for quiet.  Umm, guessing that didn't work this go around. These are noisy doctors.


And the patient survived surgery!  Now it was her turn to be the doc.  She's not as gentle as the sibs.  She wanted to do surgery on my arm while I was at the computer.  Her surgery consists of pounding on you w/ a fake hammer.  Enough said.  No wonder Summer and Nik didn't want to be Sofie's patient.  

Nik wanted me to take a picture.  Notice where he placed the electrodes?  He thought this was hilarious.  Boys.  Sofie was not happy he took her electrodes away.  Duke only gave us 2 to play with.  I'm relieved mine aren't performing any of the surgeries this month.  But, glad they had fun w/ Alyona's stuff and that Alyona helped play along and tell them what all it was for.  

Today is Saturday and it rained all day long.  We didn't end up going to the cold, wet parade.  Wise choice.  Got a few things done.  Kids voted to do cleaning the house tomorrow and just have a stay at home day today w/ movies and popcorn.  Fine with me.  Tomorrow we'll play catch up and really start getting it all done.  More to come on what is happening with (or to) Chaos Manor.