Thursday, October 30, 2014

MRI/ EEG today

This will be super short as it is 11:47 at night and Little Guy is still up.  They told us he may or may not be up all night.  Well, definitely seems like he'll be up all night long.  If you see a zombie around here tomorrow, I assure you, it's me.  I am dead beat tired and we can not sleep.  Screaming.  And we know it is the medication.  Which brings me to today.  Our Little Guy had a sedated MRI/ EEG.  Trouble was, it almost did not happen.  They had a great amount of trouble getting him out.  And I mean a lot of trouble.  Fighting it was an understatement.  Like it had no effect on him.  A final drug that usually knocks people out w/in a minute, took him ten minutes and even then, he was still restless.  The team was great and really made a rush to get it done as we were all afraid it wouldn't last.  Doc even noticed some seizure activity during the MRI.  We saw them do the EEG and it doesn't take a brain surgeon to figure out that screen was really active.  But, we all went in knowing he most likely had seizure activity so no surprise.  Just was shocking to watch how much.  No, we can't read it but not hard to figure out.  Plus, you see the reaction on the people's faces' there. 

We received no results today.  Not sure when we'll get them.  Ready to hear about the MRI.  Also, looking like we may need to see a cardiologist.  All of us were watching the monitor.  Now, the telemetry machines I can read!  See, that major in college came in handy for something.  LOL.  Doc really listened to him and thought she heard a murmur.  Now, other docs we've seen have given him a quick listen and have not heard anything.  So, no telling but always better to be safe than sorry so calling cardiologist next week.  We were starving by the time we got home.  Unfortunately, I didn't think we'd be there all day.  Got home after 7pm.  Fish sticks.  You know, that last resort 'meal.'  After grilled chicken, homemade mashed potatoes and corn last night, none of us wanted to eat.  Call it taking one for the team.  Kids went to youth group and enjoyed it.  The three boys had to miss tae kwon do. There was just no way to make it on time.  Overall, busy day but we got done what needed to be done.  Now, focus shifts to the upcoming trip.  Wahoo!!!  Tomorrow, only house guest has dance.  Since the homeschoolers hung out with friends today and played and went to youth group, now it is make up school time tomorrow.  I'm sure they'll be thrilled.  Hey, has to be done.  More posts to come tomorrow. I just didn't realize today would wipe me out and that we'd be at Duke all day long.  Now, to wait for answers.  The hardest part for any parent.

Tuesday, October 28, 2014

Manic Monday... a tad late

Yes, been one of those crazy kind of weeks here.  So, here goes:

  • Max got his license today!
  • Little Guy has an MRI/ EEG at Duke
  • became very clear that Little Guy has some past trauma
  • Little Guy is starting to turn around when walking
  • kids are excited about upcoming camping trip
  • kids are making some Halloween costumes
  • working on surveys
  • cleaned house this weekend
  • have speech/ OT/ PT this week for some of the kids
  • Bojan is getting two new running legs and a new leg (more later)
  • RV got inspected
  • tae kwon do and dance this week
  • Civil War class and Spanish as well
  • kids may go to story time again tomorrow
  • Max's computer needs a part
  • Sofie is stuffed up
  • weather is fantastic here in NC
  • sending in forms for Nik's new Neptunes (more on that later too)
  • parents are moving to FL for retirement
  • medical bills are just wow
  • Irina and Max are still working
  • Max is saving up for a car
  • Bojan is doing extremely well in school
  • Alyona will be in high school next year
  • homeschool is chugging along
  • need to order frog to disect (fun times...anatomy)
  • very tired
  • figuring out what we're doing for Thanksgiving
so, a ton going on and even more than listed.  Just been super duper busy and Halloween is coming up.  And no, we are not ready.  Shoot, we are an epic fail at this house.  Didn't even get all our decorations out this year.   Let you all know how tomorrow goes.  Need to get to bed.  Up in a few hours so he can eat as can't eat anything past 6am.  Oy!  Why do they do that to little kids?  Why not make them first on the docket?  His is at 12:30. 

Friday, October 24, 2014

Flabulous to Fabulous

Okay, time to get back on track as I fell off this one big time.  I was doing good for some time and it seemed I was doing good when I reported on here.  So, going back to posting on here every Friday to hold me accountable.  So, locally, there is a FB weight loss group that started.  We somewhat hold each other accountable and meet for exercise.  I have not been able to but that will soon change.  Another lady who is also a mother, checked out a gym yesterday.  Right around the corner from me.  We want to join and go together or at least sometimes together.  They have childcare and I think this would be doable.  So, making the statement here as to hold myself accountable.  I am very ready and needing a lifestyle change.  I want to be able to beat Bojan in a race one day.  LOL.  Oh, that is a whole other post.  Awesome news and will be sharing VERY soon.   Been just busy today and last two days honestly.  Why I haven't posted anything.  A few dreams coming true around here, that's for sure. 

So, I will be setting mini goals for myself and writing here what I did AND did not achieve each week.  I am hoping that and joining a gym with a partner is more likely to keep me in line and eventually, get me in shape as well. 

Tuesday, October 21, 2014

Dentist visits/ OT/ PT and such

The other week the remaining kids went to the dentist.  I ended up having to buy a new outfit at Burlington Coat Factory (quickly realizing why we normally don't shop retail) due to Sofie forgetting to use the bathroom before we left.  I know, nice one.  Anyhow, we were anxious to see if we still had our couple year streak of no cavities for ALL the kids.  Well, houseguest needs one tooth pulled as it will just not come out and other tooth is struggling to get in.  Reni needs new sealants.  Summer, poor kid, needs 4 teeth pulled as her mouth is so very crowded.  All that is set for December 11th.  Then we have Logan.  He broke the streak.  URGHH!!!  Though, dentist explained it's really not his fault.  Deep grooves.  So, he gets one.  I think one of the other kids that day needed one too. I think it was Alyona.  Don't remember.  Been years since any had a cavity.  Something we always joke about.  But, we're also very thankful for it.  So, that was the dentist visits.  Oh, oh, forgot the most important thing.  Sofie.  Sofie can not talk.  Well, she can but no one can really understand her.  Severe speech apraxia as well as a very high palate.  Comes from finger sucking.  We have tried no bite. We have tried hot sauce.  Gloves.  You name it.  So, it has come to her needing an appliance.  A thousand dollar one NOT covered by insurance.  Kids are all desperately trying to get her to stop b/c I said if we can't get her to stop by next time, they will put the appliance on her to prevent the finger sucking as well as correct the severe crossbite it has caused.  URGHH!!!  Dentist told us to order Mavala from Amazon for $13.  He said worth a shot.  Ordered it.  Did nothing.  Applied it twice.  Nothing.  So, kids and us are trying our best to stop her b/c if we don't, we can't go to the Bulgarian Reunion next year.  Needless  to say, no one is too pleased w/ Ms. Sofie and the finger sucking right now. 

Today, our PT and OT came for Little Guy, Sofie and Summer.  Little Guy gets OT, PT and Speech.  Sofie and Summer OT and speech of course.  Love the OT that came today and taught us things that we can do to help Little Guy stand up better.  I think with the team of therapists we have, the kids will surely improve on some things.  Can't wait.

Tomorrow, we have story time.  Also, all the kids have youth group and 3 of the boys have tae kwon do as well.  Only speech comes tomorrow.  We will get things done.  One day.  Bojan has the opportunity to go to a conference and learn an immense amount.  This is with his prosthetist.  And when a once in a life time opportunity comes around, you GO.  So, he will get out of school a little early but very well worth it.  Can't wait to hear more!  So much going on at once here but we've got this as the saying goes.  Very happy with the way things are right now.  Good things happening here to be sure.  Yes, we are tired.  But, it is a good tired.  More to come.  And pictures. Definitely need more pictures.

Camp Woodbine

Each year, we try to go to Camp Woodbine.  It is a camp for hearing impaired kids and their families.  All are invited w/ no cost to the families.  It is amazing.  It is just for the day but such a wonderful set up and so much to do for all ages.  As my kids get older with some of the places we go to, they get to volunteer.  I don't make them.  I don't make them go and I also don't make them volunteer.  Only do it if they want to.  And well, this year Irina and Bojan wanted to.  Was proud of them for that and got such glowing reports on them, made me very happy to be their mom.  Well, time to get to pictures. 

 Sofie with her gear on and ready to go. 

Nik and Summer.  Umm, right where they belong!  LOL.  

Alyona trying to make her bandanna stylish.

Little Guy getting used to some new terrain.  We tied his bandanna to his walker.  Lots of hills and rocks.  quite the work out for him and us!  

My kids could ride horses all day long.  Truly, they could.  Here is Sofie.  Really growing up.

And Ms. Summer playing a game.  She had so much fun.

Didn't see Irina or Bojan much as they were the volunteers.  But, a quick shot of Irina as we passed her in the game section.  Such a gorgeous day for these events.

Nik at home with archery.  Really a sport he needs to take up.

And could not believe the shots Reni got in without her glasses!

Sofie and Little Guy(not pictured) really loved digging for gold in the sand.  They could have stayed at this station all day long.

Summer was so proud she got to hold the sign for her group.

Summer getting ready to ride.  Fun times.

Nik is right at home on a horse.  If we could ever change professions, farm ownership would be in our future.  All my kids love horses.  All of them.

And this is the trip home.  Sofie is NOT supposed to be sucking her finger.  Separate post on that one real soon.  It's serious.  Anyhow, we all had a fantastic time, company was awesome, compliments were sweet, and the A/B rep is working currently on Nik's case!  They are trying to resolve an issue and Warren volunteered us as beta testers.  Umm, they may take us up on it.  Wouldn't that be awesome?  This is a wonderful event and if in the area next year, you must go.  Only a day but lots of fun packed into it for sure. 

Monday, October 20, 2014

Manic Monday

Well, a new week has started so here goes:

  • Had an awesome weekend 
  • Went to Camp Woodbine.  (pics later today)
  • A/B rep is going to help us!  Very excited about that.  Nik may even get a shot at Neptunes!
  • Social Worker came yesterday
  • PPR's for two kids getting done
  • Going to need to fundraise soon
  • OT and PT start for Little Guy this week
  • Little Guy has speech eval
  • Summer, Sofie and Nik have speech this week
  • Civil War class Friday
  • Spanish Tuesday
  • OT also coming for Summer and Sofie
  • Reni got her new glasses
  • Houseguest needs to go for eye exam
  • FAS Support group meeting
  • Going to museums this weekend
  • Going to Krispy Kreme b/c well, you know, it's by t he museums
  • Dogs need a bath. Again. Thinking Warren's dog wash idea may not be so bad
  • Little Guy and Nik are truly into Legos.  Be on the look out for cheap Mega Blocks please
  • Need to do some type of fundraiser I think for these two adoptions
  • Little Guy loves his walker  
  • Watched a friend's kids today so my kids loved that
  • air conditioner is off for good.  Weather is superb!
  • Getting organized 
  • More paperwork to do
  • Hoping Max can take a day off work this week to get his license
  • Max is looking at cars & seeing what will work (& what he can afford)
  • Bojan has an awesome opportunity this week
  • Dance and tae kwon do this week
  • Looking into what sports/ classes kids will be doing next semester
  • Taking RV in for inspection this week
  • Doing an online project that pays me to do it 
And of course much more at Chaos Manor.  Bit by bit, we get things done.  Hoping to do the Camp Woodbine post this evening after kids go to bed.  We had such an awesome time.  

Friday, October 17, 2014


Well, no exciting title there, huh?  So, today kids have Civil War History class.  I usually take them and their friends.  However, this morning was somewhat crazy so my friend took them which was a relief.  Meantime, some days are just crazy anyhow.  Little Guy was in a very cranky mood and Max obviously needed to go to the urgent care as swelling had not subsided.  Yesterday at work, hornets got under his work gloves and stung him repeatedly. This morning, still swollen even after benedryl.  They gave him a shot of benedryl, shot of cortisone, and starting on prednisone tomorrow.  He had more benedryl this evening and the hand is still super swollen.  Took a picture on the ipad but can't get the pics to transfer to here.  Needless to say, Max has been pretty doped up all day and sleeping most of it. 

Kids went to class and them and their friends came to hang out. They made us brownies.  Yum.  We all ate lunch together. Then, speech therapist came.  In addition, a new OT came for evals for Sofie, Summer and Little Guy.  Can't wait to get started on some things.  Next week!  Kids played most the day.

Tomorrow is a really busy day with us going to Camp Woodbine.  Can't wait!  So much fun each year.  I'll have pictures tomorrow so be ready.  Supposed to be a beautiful sunny Carolina day and cool weather.  Well, nice weather.  In the 70's.  Perfect for being outside all day.  Kids are very ready to go and have some fun.  Working on a bunch of stuff tomorrow afternoon as well.  So much to catch up on on this blog. One day at a time.  I'm just thrilled we get to go out tomorrow and everyone enjoy themselves.  Makes things pleasant.  How lucky are we?!  Got to go to sleep.  Have to be up early.  More to come.