Thursday, February 27, 2014

Camp Cheerio

You all know how this place is near and dear to our hearts.  It means so much to our family to be able to attend every year and learn so very much.  Not only does it help Nik, it helps the other children as well.  We have nothing but great memories from this place. 


That being said, they are hosting a silent auction this year.  They are in need of donations.  Nothing is too big or too small to help the many families that otherwise would be unable to attend.  Scholarships and such are offered.  Can be anything from monetary donations to tickets, tupperware, golf packages, you name it!  Use the imagination.  You make something and would like to donate, go for it.  I know some that knit, some that do artwork (hey, may have to get Max to do one!), some sell Thirty One products.  Anything.  There can be a variety as so many come to camp and well, frankly everyone has different tastes and needs.  If you are interested in donating, please let me know and I can easily put you in touch with the right person.  Thanks for letting me share something that is so very special to our family.  Can't wait to go again this May.  

Spring Sports Season

So, what is coming up at Chaos Manor in regards to sports and activities for the kids?  Well, Yana is doing track at high school and ROTC Raiders.  That should keep her busy and out of trouble.  LOL.  Bojan is looking at doing swim team once he gets to high school next year.  Finding out the logistics for all that and he'll practice this summer.  It also depends upon where we may move to.  For now, Bojan is still having a passion for music.  So, he has after school practices on Fridays for that. 

That brings us to soccer.  Soccer starts in March.  Unfortunately, Upwards changed their age parameters this season so Sofie isn't eligible yet to play.  Has to wait till she is 5yo.  No worries though as she'll play on the sidelines for sure.  Summer, Reni and Nik will be practicing on Mondays and have games on Saturdays.  Logan and Alex will be doing soccer at another league this season.  They have games on Thursdays and their practices are yet to be determined the day.  That should keep us quite busy during the week I do believe. 

This weekend, we will be going to a local special needs event put on by a senior doing their project for graduation.  We'll also be doing our monthly shopping.  Do that at the beginning of each month to stock up.  Would love to go to a park if weather permits.  Dying for spring to come along.  Just getting things done and gearing up for soccer season to happen.  Having ALL cleats and shin guards on the front porch in a big basket makes it so, so much easier to find stuff on game days.  Truly does. 

Alex and Logan are interested in the indoor soccer they'll be doing. They've never done that before.  So, we'll see how it goes.  Need to find indoor soccer shoes though.  Looking.  Meant to post this last night but Warren is working on the computer/ blog.  The blog starting this weekend will be losing stuff/ posts/ pictures.  Our google account for storage is shutting down.  They changed quite a bit how much you pay.  So, we're changing all that.  Time for a change anyhow, this just makes it happen faster.  Will let you know when we come up with the new blog and such.  changing things up a bit.  More in a bit.  Need to put Sofie down for a nap and get Alyona started on some of her workbooks for today.  Enjoy your week everyone.

Wednesday, February 26, 2014

Mom to the doc

Most women as mothers tend to put themselves last on the doctor list.  I'm no exception to that.  So recently, as a friend of mine was diagnosed with breast cancer.  I decided I needed to make some appointments if for nothing else, a small peace of mind.  So, that reminder letter I got back in November for the mammogram, I finally called on.  Got it done.  Results are normal.  No biopsies needed, no lumps, clear.  This was awesome news as I've had biopsies in the past so you just never know.  Healthy on that front.  No pun intended. 

Next was today.  Cardiologist.  Now, some may know, some may not.  My family heart history is not the best in the world.  So, a few years ago, did a pre-emptive strike.  Started seeing a cardiologist.  Had high bp, tachycardia, arrhythmia.  All very common in the heart world.  Well, today had my checkup with my cardiologist.  BP was 117/ 82.  Wahoo!!!  NO signs of tachycardia or arrhythmia.  Another Wahoo!!!  He said your EKG isn't just clear, it says NORMAL.  He said rarely do we get normal.  I was ecstatic going out of that office high fiving the nurses in the back.  LOL.  Don't have to go back for a whole year.  Another check up checked off my list.

My eyes I actually do get checked out every summer and get glasses as I go.  No biggie there.  When you wear glasses, you actually tend to go regularly.  As do my kids.  Doesn't hurt that our eye doc lives on our street.  And his secretary is fantastic at reminding us.  

Tomorrow is ortho for me.  I did steroid shot in my knee years ago.  Haven't done it since b/c honestly, hasn't really bothered me too much.  But, that is not why I'm going.  This time, my left wrist has been bothering me for a little while.  Hurts but not excruciating, cracks when I move it, and is swollen.  Hoping for another clear by ortho.  Maybe a sprain or bruised it or something.  I totally want to be 0 for 3 this go around. 

Just want to say it is important as the mother of many children to at least keep up with your own doctor appointments from time to time.  Very happy it went so well and that we are all for the most part healthy.  I even get to start running club with my kids on Tuesday.  Should be interesting to say the least.  More posts a little later.  Just finished reading to Sofie.  Warren is helping Nik with homework and Yana is now reading to Summer.  We're all getting things done thank goodness.  Dinner is done and chores are getting there.  Having chore trouble lately and unmotivated teens.  Hmm. Working on that one.  Got to get going and finish up some other items on my list.  Just had to share good news for me.  Wish me luck tomorrow. 

Monday, February 24, 2014

Miscellaneous pictures

Wow, really 4 posts today?  After this I'm writing a reference letter for a friend so I need to make this one quick.  Thought I'd share a few pics from the last two weeks.  Just here and there pictures.  Gives you an idea of what's happening around Chaos Manor.


Summer being Summer.  Silly.  And yes, this is how she'd wear her scarf.  


Alyona deciding not to do her school work.  Told her do it or I take a picture.  Sometimes it works, sometimes, it doesn't.  Today, she did 28 pages in a workbook.  During this picture, nothing.  Just looking for more consistency from her.


Digby loves to sit outside.  Even when it's cold.  Put the old papasan cushion down and he stays here pretty much all day long.  Barks when he wants in.  


Max and Alaska and then Nik trying to photobomb the picture.


I know you can't see it but Max is smiling.  Sofie loves big brother Max.  She has severe apraxia so it never comes out Max.  Instead, a** is his name.  We all crack up but she can't help it.  Working on it.  Everyday though, he comes home from school and spends a few minutes playing with Sofie.  Whether lifting her up or chasing her around or sitting on the rocker with her.  She eats it up.


And, I do believe she loves her big sister just as much.


 Nik enjoying a sweet treat.  While at the store, Warren bought us all a Cadbury Egg.  Hit the spot.


Summer with a goofy look on her face.  Looking at a library book


Digby helped the kids clean up their table after they ate some chips.  Now, this dog doesn't really move for anything.  Yet, here we find him up on the table.


Sofie, Bojan and Alyona looking at new leg covers for Bojan's new socket since he outgrew his again.

Well, Warren is going to do some computer maintenance this evening.  So, offline tonight.  But, gives me a chance to catch up on some other things to do around here.  Last art class takes place here tomorrow.   Need to print out a spelling list for Alyona.  So, have a great evening and will be doing a year here post for Sofie soon.  Been over a year now.  Unbelievable!  More to come. 

Couch versus child

Okay, so Valentines Day happened.  Nothing special here.  Trust me, we had a bunch going on at once and really didn't even realize the date to be honest.  Hey, it happens sometimes.  That day, I had told Sofie, as so many times before, to stop running on the couch or you're going to fall.  You can guess what happened next.  Head met the corner of the coffee table.  It was a hard call whether to take her in or not b/c I knew it would only need one or two stitches at best.  Could heal on its on possibly but with her FAS, I know how they dig at things.  So, took her to our doc.  They know us there and the kids issues.  Helps.  Had time to kill b/c it was quite the wait in line.  So, took her to Walmart.  Why not drag a child bleeding from her head through Walmart?  LOL.  Truly, it wasn't gushing and the alternative was sitting w/ a room full of people who you knew had the flu.  Not an option.  Walmart it was.  Plus, provides a great distraction to a child. 

No stitches, glue instead.  She did not like that process.  Now, the glue is where things get interesting.  You know my kids and well, many FAS children can not leave things alone.  Or, at least that has been my experience with ours.  Sofie is the same way.  So, the other day, I'm looking at her and kept looking at her.  Kept thinking she looked weird.  Well, here's why:


She kept picking at the glue.  Until the entire strip of the eyebrow was gone!  I could not believe it.


And yes, a bit dirty b/c we weren't allowed to give her a bath for a few days.  How this did not hurt her, I'll never know.  Ouch!  Redness is gone but strip missing is still there.  Not sure how long eyebrows take to grow back but we'll find out.  

But when Warren met me at the doc's office Valentines Day, he had chocolate covered strawberries in the front seat.  Yep, made it all better.  I'm sure Sofie's stunt will be the first of many in years to come.  When Max broke his wrist a few years ago, doctor said I truly am amazed you are not in here more often.  Me too.  Let's keep it status quo for sure.  No more accidents.  We have been fortunate in that regards.  With all the tree climbing, skateboarding, trampoline jumping, stunt dares, bike riding, that my kids do, a sheer miracle they're not needing more stitches or casts.  Very grateful for that.  We make up for it in surgery time I do believe.

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.

Manic Monday

Wow!  Almost 2 weeks away.  Trust me, had a lot to say but life took over.  Currently, Reni is home sick.  Logan came home today from school but ahem, he played off her being sick to get out of staying at school.  Hey, call it like I see it.  Reni however, is indeed sick.  She seems to be on the upswing though.  Sofie was sick a little as well  but truly, think hers was more allergy related.  Just been trying to stay above water lately so the blog took a backseat.  So, will do better at keeping it up b/c I think we finally got things to where they n eed to be now.  I hope.  So, start off w/ a Manic Monday post and go from there.

  • signed up boys for soccer finally
  • soccer season starts second week of March for all kids playing
  • Sofie is unable to play this season but will next if she wants to
  • my girls tend not to do dance even though I let them try
  • house on the market officially
  • getting appraisal done on it in the near future
  • looking for property all over
  • really cleaned up the inside of house
  • cleaning up outside next weekend
  • speech therapy this week
  • may have to switch up speech therapy as insurance benefits changed 
  • Alex's IEP was today and went fine
  • I have cardiology appointment
  • not sure if I said on here but my mammogram was clear
  • Irina may need major surgery
  • Alyona may have complications from her surgery
  • I need an appointment for my left hand (not sure what's up but something isn't quite right)
  • eye doc appointments were last week and they went fine
  • questionable on Max's graduation status (more on that one)
  • Yana wants to join the military after high school
  • Bojan is looking into possible swimming in school
  • beautiful day outside
  • made brownies today
  • got Yana a formal dress this past weekend for an upcoming ball
  • am exhausted from being woken up in the middle of the night the past few nights
  • can't wait for spring
  • cleaning out RV
  • planning all our trips this year
  • taxes at the accountant
  • made a to do list that should qualify as a book
  • need to make a new blog by week's end 
Oh lots happening at Chaos Manor.  We're surviving.  Getting ready for a new season in our lives in so many ways.  More to come.  Glad to be back on here.  Love sharing our ups and our downs.