Thursday, December 12, 2013

And Christmas Came Early (part 2)

Of course I fell behind.  Write now I have some sleeping toddlers which is code for time to get stuff done.  Been trying to call an ENT for Reni.  She's going to need tonsils out and that too will have to get done before year's end.  Got to love it. So, high likelihood I will have a daughter at Duke for a week, a husband at Rex, and another daughter who knows where (but most likely Wakemed/Western Wake) is my guess.  No, we can't do things the easy way.  Great news is Reni's will be outpatient and Warren's is outpatient w/ observation listed in case he needs to stay.  Sounds pretty common w/ this surgery as that's what they did w/ my friend as well. The awesome thing is once these are done, surgeries should be well behind us for quite some time.  All are healthy except for common time of year stuff.  Reni has strep right now but not a big deal.  She went to doc this morning.  We are pretty right on for dx'ing stuff.  Wish sometimes docs could just write a script with parents' dx but doesn't work that way.  LOL.  Reni is out of school tomorrow as well.  Tonight, we are getting ready to go to Bojan's concert.  Irina will stay home with Reni.  Everyone else is going.  Concert starts at 7:30.  Our prosthetist comes to the house tomorrow to measure Bojan for his new socket on his old leg.  That way, he'll be good to go for the new year. 

Well, time to actually get back to finishing some of these posts.  I left off w/ my parents' visiting so thought I'd finish up some pictures.

Max helped all the younger kids set stuff up.  Here he is helping Nik get the Angry Bird racetrack in order.

Sofie with her baby doll and most definitely in a sugar induced coma.  LOL.  Nap time.

Yes, these are my two 14yo's.  Can you believe it?!  Both have grown up.  And after surgery, Alyona may even gain up to an inch!

Sofie and my mom deciding what ornaments to put on the tree.  My mom brought a bunch down b/c of how many of ours had been thrown out.  Good thing too as the tree was pretty sparse.

My mom and Sofie decorating the Christmas tree.

Summer got into hanging ornaments on the tree.  Let's just say it is ornament heavy in one spot.  I left it that way.  We're not in any contests and kids are just proud as can be they helped decorate.

Umm, sorry kiddo, not a baby any more.

My cousin Allison and my mom.  Allison has this passion for snow despite being an NC native.

My cousin's husband cracks us up all the time.  Great guy and pretty much a kid at heart.  Earlier, he was running around w/ Alex and Logan shooting them w/ Nerf guns.

 Alyona enjoying soda. We don't really have soda in this house unless there is a party or special event.  Can you tell she likes it?

My parents treated us all to pizza and wings.  Yum.  Everyone else brought dessert.

Got out some sketching stuff as well as ornament making things.  Again, thank you Katherine!  Girls had so much fun w/ this.  

My cousins' kids and our kids.  Awesome thing is, they all play and get along SO well together.  It truly is pleasant when they're all together.

My mom and her brother (my uncle obviously).  Only one missing is my other aunt, their older sister, from PA.  My uncle lives near me so I actually see him more than my parents as they live out of state.  He's the jokester of the bunch for sure!

Was really great having everyone together.  Wished they could have stayed longer but they had to beat the ice storm home.  Was a great way to kick off the Christmas season.  

And on that note, got to go get kids ready for Bojan's concert.   Christmas concert I'm told that is not going to have Christmas music.  Do hope Bojan is wrong about that one.  Last year they played the comments in the audience were the same.  Where'd the Christmas music to sing to, dance with?  Was depressing music.  This year, hoping to go hear some good music & festive music.  I'll let you know.  Warren is going to meet us there as it's at the high school and he's at work.  Try to get pictures but truly, I like just listening to the concerts and watching Bojan play.  Enjoy your evening.

Monday, December 9, 2013

Summer's IEP results

The other week (Thanksgiving week actually) we had a meeting for Summer's IEP that was being developed. See, I knew Summer would need services.  Done this enough to know what the kids need.  So, requested testing be done.  Sent the letter like the first week of school.  I know testing takes weeks and just wanted to get started.  Meantime, Summer started a mainstream kindergarten.  Kids at that age despite disabilities, tend to easily fit in and she did.  Fine for a temporary solution.

Meeting was held.  I went.  She qualifies for OT and speech.  Knew she would though I was leaning more towards no OT, it will help fine tune some items.  Summer has speech apraxia.  If it gets to be more than 4 words in a sentence, she can't do it.  Her brain jumbles it all up.  Speech was needed.  Now, I think Summer would do better in a self-contained room.  She's all over the place in a normal setting.  I watched her at the Halloween party and truly was NOT happy.  She wasn't getting in trouble for anything she was doing & I would deem her behavior as obnoxious that day.  Maybe it was b/c they knew I was there to take care of her, don't know.  Hard to say.  Just would have liked to have seen her behave like she was supposed to.  They see her as silly and cute.  That's fine and dandy but in my experience, that's not going to help you when you're in the older grades.

Anyhow, Summer has many things going on with her brain.  I know she "looks fine" but really, there is a lot going inside her head.  She has c-ACC.  Complete agenesis of the corpus callosum.  She has extremely low white matter in her brain.  She has colpocephaly.  Told she has microcephaly but I just don't see that.  Guess it's b/c I'm so used to seeing Irina and Alyona w/ microcephaly that I don't see Summer. Guess it all has to do with measurements though as endo and neuro say Summer has microcephaly as well.  So, there are multiple issues truly affecting her thought processes making learning beyond difficult for our little girl.  Really difficult.  Out of all 11 of our children, Summer has the most significant delays.  One of her dx's alone is said to cause being severe to profoundly mentally challenged.  In other words, it is going to be a very, very long road for our little Summer.  I do think the IEP team thought we'd be a little shocked by her scores for IQ but I knew going in it was going to be hard to see.  It's okay.  Really it is.  I wouldn't change Summer for the world.  It did not help matters that Summer was in Pleven the first three years of her life.  In c-ACC kids, this is a critical time b/c some therapy could have significantly made a difference in her life.  However, that was not meant to be.  We work with what we've got. 

Summer has done, many, many things that we were told she probably wouldn't be able to.  And though we still don't have colors or numbers down, we're getting there.  She now recognizes two letters.  It is undetermined if she'll ever be able to write.  Or read.  But, we will most definitely help Summer reach her fullest potential, whatever that may be.  She brightens a room with her smile and those who've met her, truly wouldn't know the extent of her disabilities.  I do know that as time goes on, it will become much more noticeable.  And that is okay too.  Summer can do, so, so very much already.  I think she will amaze her teachers over the years.  Meeting went okay in general.  I just don't think they realize exactly why I thought she needed self-contained setting.  But, she is getting services and that is a start.  I really am proud of her.  My goal is for her to one day put on shoes the right way.  Everything goes on backwards b/c that is how Summer sees everything. 

By the end of the year, I will attend Summer's kindergarten graduation.  It will be an accomplishment I look forward to.  If she can write her name by then and know her alphabet, I will be elated. I know kids now are reading but Summer being able to write her name would be delightful to me.  Look out world, Summer is going to change the game and possibly the world.  You just never know and one thing is for sure...we never ever give up.

Manic Monday

I need to do part 2 of the Christmas early post but it is Monday. So, here goes as lots to get to:

  • Parents came to visit this past weekend and we had Christmas early
  • Had too many batches of burned cookies thus far.  (hint, never ask anyone to keep an eye on the cookies!)
  • Neighbor surprised us with cookies....not burnt
  • We are done decorating for Christmas
  • Need to go to Meadow Lights
  • Warren was/ is sick still
  • It's cold here but no snow or ice so grateful
  • Had Logan's IEP meeting this morning
  • Missed Alyona's pre-op (one part) this morning due to Warren sick & me at meeting
  • Rescheduled pre-op on Wednesday
  • Other half of Alyona's pre-op is neurodiagnositics lab at Duke (hooked up to all sorts of wires to see how nerve impulses work & such.  Takes 90 minutes)
  • Speech therapy all week and now Little Guy gets it at the house as well
  • Need to do Christmas shopping still
  • House was cleaned to the bone this weekend.  Parents came bearing gifts and well, all bets are off now.
  • Bojan's concert is this week
  • Going to the Christmas Parade this weekend.  Yana's marching in it.
  • Bojan's leg fitting is this week for a new socket for the other leg
  • Calling ENT for Reni so that she can get her tonsils out
  • Will most likely have 3 family members at 3 different hospitals at the same time.  
  • New Years is going to suck!  LOL.
  • Sofie loves to talk about Santa but is still terrified of the Big Guy
  • Wrote Christmas letter but need to finish writing the Christmas cards
More of course but too much to write.  Had a late dinner tonight and we all watched the Great Light Fight.  Pretty cool.  We love driving around seeing Christmas lights.  Kids were in rare form this evening, hence, the very late post.  Apparently tomorrow's bed time will be 7pm if that gives you an idea.  Haven't done that in ages but it's gotten out of hand lately the not going to bed when they're supposed to.  And it shows b/c this morning Alex missed the bus.  Got to love days like these.  Not really but have to get through them.  Good news is, tomorrow is a new day.  All of us have a fresh start.  Tomorrow, Nik has a whole day spent at UNC for his implant stuff.  He's excited b/c he doesn't have to go to school.  I missed a new local support group meeting tonight.  Bummer.  They'll meet next month though.  I think it will be a great group.  Can't wait to go.  Finishing up some other posts.  Busy season to be sure.  

Sunday, December 8, 2013

And Christmas Came Early (part 1)

Yesterday, my parents came to visit and have an early Christmas with the kids.  In addition, my cousins came to visit along w/ my Uncle.  Thought I'd share a few pictures from the day though not many as we were too busy talking, playing with toys and catching up.

This was the start of the piling of the gifts. They kept coming in.

Sofie loved this little cart for sure!  Very cute too.

Summer has not stopped playing w/ the leap pad she got for Christmas.

Alyona showing off her new Wii game of Tangled.

And a Dora cartridge to go with that leap pad.  Think she loves it.

Sofie also got a pink flamingo.  She's hugging it in this picture.  She got man y things but her favorite by far is a baby doll that will not stop laughing.  URGHH!!!  But we found the master switch to it finally last night.  Ahh, peace.

Angry Birds candy and a hot wheels set were among his favorite things.

Alex showing his glider.  Nerf guns were one of his favorite things.

Yana enjoyed some new clothes and some jewelry.

Some of the aftermath.  Babies, Nerf guns, chocolate, strollers, etc. everywhere.  Not to mention wrapping paper.  Lots and lots of wrapping paper.


This is Bojan opening up his birthday and Christmas present.  A new keyboard just for him.  There's games and remote control cars in background.  Definitely enough entertainment for awhile.

A shot of Sofie with that flamingo.  Matches her dress.  Who knew?!

Irina is styling with her new Coach perfume and lotion.

We even got a new popcorn popper!  Love it!  Remember, Reni broke the last one last week.  We've been through 3 air poppers thus far this year so hoping this one lasts.

My parents also came bearing lots of goodies.  As in chocolate and things.  Toblerone bars, Williams & Sonoma hot cocoa (VERY good), and too many other goodies to name them all.  Kids loved all the gifts.  We got new movies, video games, doll babies, nerf guns, clothes, and so much more.  Kids have enjoyed the gifts and played with them nonstop this morning too.  Much more on our visit in part 2.  Selling some items today to continue our mission to purge our house of clutter.  Doesn't help that I've been buying stuff at the same time.  LOL.  Bought a deli meat slicer the other day. It's awesome as we buy huge things of meat to slice for school sandwiches and things as it's cheaper that way per pound.  So, I'm off to do some laundry in my new slippers.  Comfy and cozy.