Saturday, December 26, 2015

Hey folks, this is Warren trying to set up an Amazon affiliate link from our blog.  This is mostly a test post while I work out the details of getting the link to embed in the main template. 

So, while this is not so much a "normal" post, I am sure that Stephanie will get back to the "normal" that we don't experience once she gets some sleep.  

The holidays have been full of activity and this Christmas and the past year our family has been blessed by kindness and generosity beyond what I could have ever conceived.  I hope that everyone is finding that their Christmas a blessed and happy event.

Warren

Wednesday, December 23, 2015

A Dinner Out

My parents sent us some money and we took the kids out to a Chinese dinner.  My kids love a buffet and let's just say the teen boys love food. 


A little drama on the way there.  Sofie's mouth started bleeding as she was messing with a tooth that wasn't quite loose yet. so bad that we had a diaper full of blood!  Diaper full.  We were out of tissues.  We improvised .


Girls decided to all sit together at a table.  Definitely sisters.


Some of the boys munching.  They tried so many new things too.  They loved that part.


Max was filling up before he had to work in a few hours.  All of them were having a pretty good time.

Though Nate didn't really eat, he was happy to be there.  He did eat a plate of pudding Irina let him try.

 Logan before the haircut.  He was not as quick to try some of the foods.  Especially, the recognizable aquatic ones.  LOL. 


Nothing like reading our fortune cookies at the end.  We all had a wonderful, relaxing time.  Was so pleasant to go out to eat and such a treat.  Thanks Mom and Dad for the gift!  We enjoyed our day out. 

Is Naked Ken Gone?

To simply answer....no.  Naked Ken seems to always find his way back in this house.  For those that don't know, my kids like playing with Barbies.  No matter what, clothes always seem to disappear.  Tried putting some on with marker but frankly, that doesn't work but for so long and just isn't the same as clothes.  LOL.  So, naked it is.  And hey, they are just playing with Barbies like kids do.  I've heard them play house, school, doctor, friends, etc. with their Barbies so I don't mind a bit. 


Our poor Barbie dolls.  Apparently, they are ready for a night out on the town.  In a shopping basket no less.

Then, Nik and Summer wanted to take their Naked Ken dolls exploring.  This is how they rigged them up for the hike.  One day, I know they'll look back on this and laugh and kill me for taking a picture.  But look, they are having fun, using their imagination, and smiling.  What more could I want?  Well, maybe Barbie clothes. 

Tuesday, December 22, 2015

Blessings Abound...again

As I said a few posts again, we truly have been blessed the last few weeks.  Great food, good friends, many visitors, and gifts out of the blue.  Just lots of thoughtful people in this world.  And we are fortunate enough to be friends with many of them.


I received this in the mail.


I had won one of the Facebook contests!  I was so excited b/c who doesn't love beauty items.


Our dear friends back in Garner surprised us with a feast.  And Mimi is such an awesome cook.  Ms. Bettie was over to enjoy it with us as well.   Made it that much more special.


Look at this Italian cooking!  Amazing.  Umm, majority of the stuff on Reni's side was eaten that evening.  Yep, that good.


We received a gift from my sister and her husband.  The perfect gift!


Believe it or not, all were excited about this gift.  Nik bugged me for two days straight to make pancakes.  We missed them so much.


How awesome is this?!  An anonymous person gave us a griddle as well.  We have already cooked on both at once and that is the ticket to finishing breakfast faster around here.  Love them!


We were blessed with two cakes the other week.  Summer gladly deemed them her birthday cakes.  And yes, we did have them for her birthday.  She was in love with getting to eat this bow.


These were so beautiful.  Fit for a princess and that was Summer.  Again, so many have blessed our family it is just amazing. There are no words for the generosity we've experienced. 

Those Unexpected Projects

Okay, so my kids have all known for years one of my biggest pet peeves is waiting till the last minute to let me know if they have something due the next day.  Sure enough, Bojan did it.  For French Class.  He informs me at 9:00pm at night he needs to cook something French for school the next day.  Really?!  So, scrambling on the internet at night, we decided we needed easy at that point.  Crepes it was.  I still had fresh strawberries I had frozen from the summer when we picked them.  Perfect. 

Warren teaching Bojan how to cook them.  After, Bojan took over.  


Trouble was, they tasted so good, ALL of us ate them all.  So, he and Isabelle got up early hte next morning to make them fresh for his school.


This was the night time batch.  Fruit to go along w/ it.  Next weekend, Isabelle and Reni made crepes for breakfast.  Delicious!  We love it and were glad for the class project.  He got a 100 on it.  Hey, we turned a stressed situation into fun.  That's what you have to do around here you know.

Toothless for Christmas!

And it is Sofie this year that is toothless for Christmas. She lost her first tooth last week.  Woke up with a missing tooth.  At first, we thought she swallowed it but it appeared so we were good.


I do believe Sofie was a tad bit excited about that first tooth being gone.


Of course, she has bugged me for days to go spend her dollar. So, we went to Dollar Tree last night.  Made her night.  She bought gum drops and bubble gum.  Mom may have helped w/ that dollar amount a bit.  Then she had trouble letting go of her money.  Don't we all?  She can't wait for her next one to fall out now. 

Manic Monday

Wow, didn't realize the holidays had me as busy as I was.  I totally forgot I had a blog.  Let's start this week off right.  Here goes:

  • Bojan and I have taken up walking together
  • I'm trying to bit by bit get heatlhy
  • kids are beyond excited for Christmas
  • we have truly been blessed by some Christmas Angels
  • Nate is really developing a personality
  • speech and OT this week
  • no activities as Christmas Week
  • we go Christmas Caroling on Wednesday
  • Christmas Eve Service on Thursday
  • we need to make more Christmas Cookies
  • we got a lot of little stuff done this past weekend
  • our to do list is slowly getting done
  • Irina's surgery is in January
  • so much happening the next few weeks
  • Max still loves his job at UPS
  • Irina is working at Revlon still
  • Bojan will be job hunting over the break
  • I have tons and tons of paperwork
  • local vet called me today to make an appointment
  • one day, I'll get those Christmas cards out
more, more, more going on here at Chaos Manor.  Will update for sure this week as I'll have a bit more time believe it or not.  Hope everyone's Christmas Week is going well.

Thursday, December 17, 2015

Surgery Scheduled; Know the next one tomorrow

Will be brief b/c so, so much transpiring these next few days.  You have no idea!  LOL.  Anyhow, Irina went to the ENT on Wednesday for her followup.  Still really, really bad.  Surgery is needed asap but doc is out next week. So, January 7th is surgery for Irina to remove the polyp.  Then, they will look at the ear drum and figure out from there.  However, surgeon said good possibility this will end up being two surgeries.  We'll know in awhile if hearing loss will be permanent.  Right now, classified as conductive hearing loss--moderate.

Next, we have Alyona.  She is going to the ER tomorrow morning, Thursday.  She is in pain and sorry but we can't wait till the 25th for her appointment.  That would be cruel.  Also, rather miffed no one has called me back when I told them I needed to leave a message w/ nurse of how serious symptoms are. 

Well, today came and went.  They went to the ER.  The ER docs focused on her back pain.  They did an x-ray to make sure her hardware did not move.  Checked the pressure in her eyes.  And, said most likely a muscle spasm and to come back the 25th for her neuro appt.  Hmm is all I can say.  Her dizziness and severe headaches in the back of her skull have gone on for months and been getting progressively worse.  One doc even mentioned seeing muscle strains/ headaches in teens due to coffee/ soda.  Alyona does not drink any coffee.  She only has soda when we have a party or go to one.  That's the only time we really have soda in the house...an occasional treat.  Now, I will say she doesn't drink that much water so we are getting on her about that one.  But the rest, she doesn't do.  My gut says something else is going on here.  Others agree w/ me on this and her therapist is going to write a letter for our next appointment.  Confusion is another symptom of hers.  So again, we wait.  Nothing more I can do.  Took her to the ER like everyone said.  Keep you posted as to what the 25th brings.

Tomorrow is busy.  Therapies, pick up Bojan, go to a friend's house, have a homeschool party here at this house, take the teens to a church party.  Never dull here.  Though kids will tell you otherwise.  I will try to catch up some more this weekend.

Wednesday, December 16, 2015

Blessings Abound!

Truly, the last week and a half has been a little bit overwhelming for me.  The hearts of so many have blessed our family in one way or another.  Here are just a few examples.


A big box arrived from my Aunt Dianne.


Course they dug into it.  Christmas cards, bookmarks, calenders, books, etc.  Even candy.
 

This was a neat book that came too.


Was very sweet of our aunt to think of the kids.   Some very neat things that we all enjoyed.


This was like an ice cream truck arriving for us!


Waiting for the new washing machine.


Reni holding the shop vac hose.  The dripped pan and elsewhere was filled with water.  Yes, leaked to the floor below which was garage area.  Guys were really nice that put it in.  It got put to use right away.  Life changing to be sure!  This was from an anonymous donor.  We couldn't believe it but are sincerely grateful.  Tub washing is no fun.

We have been blessed with clothes for the kids, wonderful diners, gift cards to a steak house for our anniversary, dinner out, and people visiting.  We are so very fortunate and extremely grateful for all we've been given.  Truly have been overwhelmed by the generosity.

Monday, December 14, 2015

Manic Monday

Boy this season is flying by!  Was a wonderful weekend.  More to come for sure.  This will be quick. 
  • had a great weekend at a show at church
  • kids have AWANAS this week
  • 4-H has a party
  • Nate gets a feeding eval this week
  • speech and OT this week
  • Chick Filet fundraiser (we were given tickets to yesterday!)
  • library
  • oil changes needed
  • dogs need a bath
  • Irina has ENT appointment to determine surgery
  • park day w/ homeschoolers
  • teens have a Christmas party at church
  • bojan has early release
  • have homeschool party here at our house
  • need to wash cars
  • making appointments for various doctors
  • still trying to locate dentist for kids...urghh!!!
  • need to haul off trash
  • need to pick up glasses for Alyona.  Reni's aren't ready yet.
  • need to order part for kitchen stove
  • called school for Sofie for IEP eval
  • need to write thank yous
  • clearing up multiple insurance issues
  • need to write Christmas letter

Much more going on as usual.  But, we still take things day by day.  This is a very, very busy week for us but I am determined to do at least one to two posts a day.  My goal.

Sunday, December 13, 2015

A Grinchy Friday

This weekend, we wanted low key.  Decided to go to the library Friday with the kids to see Santa.  That was a lot of fun as we were the only ones there pretty much.  Kids got to make a bookmark and even got a book.  Then, came home and had delicious steaks on the grill a friend gave us along w/ some potato salad and potato skins.  Yeh, not the healthiest of evenings.  After dinner, we made Grinch kebobs and watch the movie.  Bojan's friends were also over with us. 


The girls were eager to get started on the kebobs.


Alyona assembling hers.


Not too hard after all.  Nate kept eating the grapes though.


Isabelle showing Reni how not to cut the strawberry earlier.  LOL.


Reni's finished product.


Soon everyone was coming in to get involved.  They were eating them faster than we could make them though.

while making kebobs, some were playing chess in the school room.


Bojan had friends over as well.  Nice they let the little kids hang out with them.


Bojan wondering what his next move will be.


Our shot at the Grinch kebobs.  As seen on Pinterest.


More work.  Would have been easier just to eat the fruit separately.


I promised them Grinch popcorn but no one wanted popcorn except Nik as we also had cake that evening.  But, Reni was a sweet sister and helped him make regular popcorn anyhow. 

Saturday, December 12, 2015

Random of Nate

Today is Saturday and thought I should at least post something despite my laziness.  I did a few errands today.  We all went to a performance tonight at the church.  It was wonderful.  Alex and Nik went with our neighbor Jimmy today.  He took them fishing and out for burgers.  They had the best time.  Nik was SO happy and could not contain himself.  He was telling me all about how fast the boat went and all that stuff.  Was great.  We have such good neighbors and friends here.  Truly, we do.  So, low key day for us. 

Thought I'd share a few pics of Nate from the other night.  Nothing special, just random pictures.


Irina feeding Nate ravioli.  He starts feeding therapy Monday.  He refuses to eat in the high chair and frankly is getting too heavy to hold.


He loves that ravioli of his.


Squeeze from one of his sisters.


All the poor dog. Nate has discovered the dog....and her tail.  He just wants to pull her hair out.  Thankfully, a very tolerant dog.


Alaska is so good to him.  She has spot where he can't get to her though just in case.


We tell everyone he is not spoiled, just overly loved.  Can you tell?


Thursday, December 10, 2015

Nate's Needs/ Issues

Nate, Nate, Nate.  Oh so much to say about our son.  But, this will strictly remain a medical type post so not as exciting knowing what he can do.  That's for another day.  Nate has had tons of medical testing done including genetics.  I'll cut to the chase.  Genetics found nothing though one more blood test to be run. They are pretty positive he has Angelmnan's Syndrome.  We'll see.  Nate is very delayed but we think he's smart.  Medically, not doing too bad.  His ears give him a rough time so this past Monday we went to an ENT to see about tubes.  Doc said wait and see.  Nate gets ear infections a lot.  I only take him in for the major ones.  I told doc fine, I will take him in for the minor ones too that I'm used to treating at home.   So, next infection I'm supposed to go in so that it can go on record.  Gee whiz.  Trust me, we don't willingly ask for surgeries.  It is the last thing by far we want to do.  Surgery is no fun for anyone.  But, sometimes, it makes things better.  And I truly feel tubes would help Nate.  He claws his face up when his ear hurts.  For now, all we can do is wait and see.  Doc is reluctant.

His ortho ordered smo's for his ankles.  We don't use them.  At all.  Bojan's prosthetic team and us watched his gait, watched his feet and all of us agreed he didn't need them. Honestly, we weren't really sure why doc ordered them.  Prosthetist made them but he does fine without.  Originally, it was supposed to be for support.  But they were ordered when he was just learning how to walk.  We'll follow up with ortho when we go in with Alyona.  But, he is doing awesome with walking and starting to try to run.

Biggest issue the team has with Nate is his weight. They feel he is not gaining enough.  They are pressing for a g-tube. We are adamantly against it.  His therapy team and us feel he'll just rip it out.  Plus, he IS growing.  GI says he is growing up but not out enough.  Remember though, he is failure to thrive.  So was Alyona.  His history may be that he is just from a skinny family.  who knows.  So many factors.  He wore a 9 to 12 month top, 18 month bottoms last year.  Now, in 3T's.  He IS growing.  Our social worker yesterday didn't think he was overly skinny either.  So, we wait four months and take it from there.  I know the GI will still push for the tube but I just don't feel it would work for Nate.  He's a tough case. 

Lack of sleep.  This is by far his biggest issue and ours. It is hard to run on zero to two hours of sleep some days.  Really, really hard.  We're doing it but doesn't mean it's a cake walk.  See, Nate has severe PTSD.  Severe.  There are certain triggers.  Electrical cords, base noises, hair clippers, etc.  Nate will get 'stuck' sometimes in what we call an episode.   Just this week, he woke up.  Screamed three hours straight.  Literally screamed.  Looked terrified of something but nothing I did helped him.  IT's hard to see your child in such distress and not be able to help them.  Just try your best to soothe them during the screaming and not wake up all the other kids.  Nate does not nap.  Ever.   Nate's sleeping is not the best either.  And yes, we've tried just about everything you can throw at us for a remedy including meds.  Remember, t his is a child that the Duke sedation team was ready to give up on b/c they could not get him to sedate.  Every night Nate will fall asleep on the couch with Warren and I and then we move him upstairs.  He never likes to be alone.  And will never willingly go to sleep on his own in the crib.  We've learned little tricks to help.  Footy pajamas do help.  Majority of the time though, at some point in the middle of the night, we have to go get him and come put him in our bed.  Yes, we have a king sized bed but with Nate, that is definitely not enough room.  And he kicks!  Makes for very unrestful sleep.  For everyone.  Combo that with Max who leaves for work at 2:30 am and well, we are tired.  So, working on this issue the most.  It has gotten better I will admit.  However, still needs some help. 

I think those are the highlighted medical items.  He no longer head bangs.  But, he will claw at his face.  We have no more seizures with him so that is good as well.  Nate's made a lot of progress but we still have quite a ways to go.  We'll get there day by day. 

Wednesday, December 9, 2015

Irina's Ear Issues

Not sure how many on here know.  On August 30th, Irina accidentally poured super glue in her ear.  She's had surgery, been to the doctors many times, had multiple infections, been on antibiotics 4 or 5 times and been in severe pain on and off.  She finally got to the specialist at Duke today.  Irina's ear canal was SO swollen, they could not see inside to the ear drum w/ the super glue on it.  She also now has a polyp.  They gave her special medicine that is in powder form for the ear.  She uses this for a week and goes back next Wednesday.  If the swelling hasn't gone down, surgery for sure.  If it has, then they determine from there if they need surgery for the ear drum as well to get remaining glue off.  As of today, she has conductive hearing loss at a moderate level. So, we are at a stand still once again.  It is not looking good for her ear nor the hearing at this point.  Time will tell. 

Kids had AWANAS tonight.  Sofie was made to stay home for being bad last week at church.  I mean super bad.  I was appalled.  She got the message loud and clear and kept apologizing.  Sofie is going through a phase lately and we're trying to nip it in the bud so to speak. 

Tomorrow, we have a homeschoolers park day.  Hoping to meet some folks.  Plus, weather is going to be gorgeous.  Can't wait. 

More posts forthcoming.  Just been a super duper hectic week is all.

Friday, December 4, 2015

It's Finally Friday

Sorry for slacking on the posts again but it has been one of my busier weeks and well, blog is last on the list of things to do.  Today is Friday.  Took Isabelle to the eye doctor.  All is good.  Can get new glasses in January.  We can get them once a year with our plan which is great.  OT came today and worked with the kids.  Did some errands.  Kids and I went to the local Christmas Parade.  Low key event which was nice.  Came home and made them hot cocoa with whip cream. Yum after a chilly parade.  Warren got home and we had a simple dinner.  Hot dogs, tater tots, and green beans.  Neither of us felt like cooking.  Could you tell? 

My mom sent two packages of ornaments today which was fantastic. Enough to do the tree.  Yes, our tree is missing the top part.  See, we always had a giant fresh tree in our old house b/c our ceilings were so tall.  Here,they are not.  But, I found a tree on a yard sale site before we moved here.  Bought the tree on good faith that ALL the parts were there.  Box looked full.  Nope.  Not all there.  Otherwise, it would have been a gorgeous tree.  Since we can not afford a new tree this year, this will have to do.  Decorating it tomorrow as well as more of the outside. 


Logan and Warren working on assembling a Christmas yard decoration my mom gave us.


Because you know, nothing says Christmas like a 6.5 foot tall light up giraffe.


Nik had to take his picture in front of it.  As if he was on safarri.


Since it was raining that night, we just put him on the porch till later.  Was kind of creepy that evening.  Warren says he's the toys 'R Us Giraffe.  

More posts to come.  Tomorrow, we just have church in the evening.  Oh, and picking up our eggs from the farmer.  But other than that, doing school and cleaning up.  We have been gone a lot this week so need to get caught up on some school work to be sure.