Saturday, January 24, 2015

Liv's eyes.... the ongoing saga!

{I wish my grandma was still here.  She loved to talk about Liv's eyes with me.}

Incase you don't know her story, when Olivia was first born we joked about her crossing her eyes.  In a "man she's trying so hard to see....haha" kind of way you do with newborns.  Given her prematurity, she had a scheduled eye exam at 6 months of age, at which point it was becoming a concern she wasn't growing out of this eye crossing.  That eye doctor refereed us off to a pediatric ophthalmologist.  I found a second, and we had 2 visits back around August 2010.

Livi was diagnosed with strabismus.  Specifically, intermittent alternating esotropia.  Meaning her eyes take turns intermittently turning in.

Shortly there after, she started wearing glasses.

For a while, it seemed to fix things. 
Then that ended.  And we noticed mostly her left eye turning.
So she started wearing a patch.

The doctor felt she was at the best place she could be with her actual vision, both her actual vision & the frequency of eye turn was equal in both eyes.  Yet her eyes still turned, both with & without glasses.

So we scheduled surgery.  Which was a terrible experience.  It was a hard week after.
 But the end result was this.  So we were pleased.

That was August 2011.  Here we are 3.5 years later...

We started noticing somewhere around a year ago some turning again.  We saw it as turning in.  But our eye doctor corrected us, her eyes this time were alternating turning out!  We were just expecting an inward turn, so we completely misinterpreted the direction she was looking!  They also deviate vertically with the outward turn.

We've now seen 2 very different specialists this month- on 2 very different ends of the spectrum.

We were referred from our eye doctor back to the surgeon.  He diagnosed her with dissociated vertical deviation (DVD).  I read somewhere that "DVD is to strabismus as fever is to infection."  That a DVD is somewhere around 50% likely to occur after strabismus surgery.  And some research I did tonight said that without surgery prior to age 2, the incidence of DVD is as high as 80%.  So I guess this shouldn't be a surprising place for her to be.  He recommended a prescription change, and a follow up in a year.  He said the severity of her DVD was mild & not surgery worthy.  And that her vision in both eyes is great!  If anyone out there would have pushed for surgery it would have been him.  So since he saw no need, I feel confident that surgery isn't the route to go.

I also got recommended the name of a vision therapist, and have done a bit of research regarding it.  Vision Therapy (VT) seems to still be a pretty newly accepted thing, and in fact many people in the medical community don't believe in it at all.  They told me that only one insurance carrier in NE will even accept claims for VT.  Luckily that's the insurance we have... unfortunately its still extremely expensive!!

The doctor at this focuses more on the neurological side of strabismus, rather than just the muscular side as a surgeon would.  The Dr. at this office feels that Olivia is very rarely using both of her eyes together to see anything.  She has great vision in each eye, but she is almost always suppressing one or the other.  Try walking around your house, or reading, or doing simple tasks alternating closing one eye or the other.  They believe that is how she sees.  I am shocked!!  

We've done one practice run to see if Olivia is old enough to be capable of doing VT.  Vision Therapy is essentially training your brain on how to correctly use your eyes.  Through watching her do some of these exercises, I do agree, she is very often suppressing one eye.  BUT it appears she CAN actually fuse them both together & see the whole picture.  Which is what VT would ideally teach her how to do & control.

The problem is at age 5, lots of kids aren't capable.  Not that they aren't smart, or physically able.  But that A) 5 year olds lack the communication skills & vocabulary to communicate to you what they are seeing.  and B) 5 year olds try to hard to please you.  For example, they did one test with Olivia with some glasses & had her point out what she saw.  They then TOLD her they turned the glasses upside down, (however in truth the glasses stayed the same) & again asked her what she saw.  She had 2 pictures to choose from to point at.  Given that they told her the glasses were upside down, she though she should see something different, so she pointed to the other picture even though that's not what she really saw.  She just wanted to be right.  If you can't be 100% honest & communicate effectively what you see, it won't work.  We also did some test runs with a therapist who also has an early childhood education degree & Liv seemed to do better with those.  So she's kind of on the fence.  We're going to go ahead & TRY... see how it goes.  And if we get a few weeks in & see its not going well, we'll stop & try again in 6-8 months. 

Liv & I discussed honesty & not being shy if we do this.  And she came to the conclusion she would be able to be less shy if I waited for her in the other room.  So I think when we go back next week we'll give that a try.  If in fact she can handle going-it-alone it would make the whole process easier.  I could tote the boys along then.  If I have to sit with her the whole time (no idea how long a session truly lasts) I'm stuck trying to find help with the boys every week!!

 How the brain & eyes work is simply amazing.  And even these few diagnostic appointments with the vision therapists have been so eye opening into her world.  Its amazing actually that her motor skills are fine, that she's reading, etc.  I wonder sometimes if her shyness is somewhat a side effect of her vision?  I know that's not completely the cause, but it could play a part?

So here we are.... hopefully we can  have success with this!! 

Holiday Programs

We really talked up school programs this year trying to break our shy munchkins out of their shells.  And we did awesome!!

First, they had their Sunday School Program & did so well. 

Then their Preschool Program was next.

Hayden started out kind of timid, lots of finger twiddling.
 But he really knew & liked his second song & he got into all the actions.

P.S.  Lighting for pictures in theaters is terrible!!

Olivia was a rock star!!  The boys had "tattled" on her about not singing in the gym for practice at school so we had a talk about having fun & not caring about anyone else.  And she rocked it.
 Might of helped that she got to stand by her boyfriend Greyson :)

Logan always seems like Mr. Stoic up on stage.  You wouldn't guess he's such an ornery, squirly being.

Analeigh came to watch & they all got to see Santa afterwards!

Saturday, January 3, 2015

She's home

My grandma sent me home once years ago with a note that read "The greatest gift I can recieve, is to know I'm no longer needed." It's words I've never forgotten, and words I've never understood as well as I have the past 4 1/2 weeks. What a peace it must be in your passing, to know you have fought so hard, lived so full & loved so strong that those you love most have the strength to carry on. She loved me in such a powerful way, a love so strong it hurt. I pray, if nothing else, it's a part of her I can pass on. May today be full of the most joyous of Heavenly reunions. Rest in peace dear grandma. I will carry you with me until we meet again.

Christmas Cuties!

Merry Christmas 2014!!

Love:  Olivia, Hayden & Logan

I had to talk up wearing church pants & sweaters to the boys for a solid week prior to their program.  My track-pants & t-shirt wearing boys don't appreciate how good they can look all gussied up!  Liv on the other hand is becoming a girly-girl & is sporting a scarf, matching hair bow & charm bracelet all of her own choosing. 
Hope your Holiday Season was full of love.

Friday, January 2, 2015

Year in Review

2014.... oh 2014, how I wish you could rewind.  Moments of this year are things I will never again get back.  Every year here on forward will never again be the same.  Its a year of an ending.  It will be the last chapter in a book of life.  It was one full to the brim with love, laughter & life.

I can't believe its only been a year since we ditched our sippies!   I went back to working the night shift!  And surprisingly I'm still there & still alive.  We continued down the infertility gauntlet.  Our roof tried to blow off!  And I apparently was so sleep deprived I forgot to take hardly any pictures at all!

The kids kept growing & growing!!  We went to see our 1st movie in the theater & spent some time in the snow.  We reminisced while watching the winter Olympics.  And I apparently didn't blog very much.

We enjoyed an early spring.  Took a spring break vacation to the indoor water park.

Some house projects got completed.  We saw the Easter Bunny & celebrated Easter!  My grandma was feeling her best during this past Easter, it was her best time this past cancer-filled year.  Those moments will remain frozen in time.  And we filled the rest of the month with chaos, fun & love.

Like usual, over Memorial weekend we spent some time with family in Minnesota.  Nebraska had devastating Mother's Day tornadoes, which was just the beginning of an all together horrible storm season for this state.  The kids flew their first kites.  It was unusually warm enough for sprinkler fun.  
We had fun outside & we had an unusual lump appear in our back yard!  We of course went to our favorite circus!!  Addie & Ava came to stay while Tisha & Aaron celebrated their 10 year anniversary!  We did SOOOO much with them!  The zoo, the lake, a birthday party, and we rounded it out with some fireworks!  

The kids caught their first fish!!  We took another summer trip to the zoo.  We did projects, went swimming, slip & sliding, back yard camping & all the other things a summer should entail.  We had our first ever swimming lessons, baseball game & Vacation Bible School!!  We went to parades & were so excited the Air Force Show returned.    And we rounded out the month with our annual caboose camping adventure.  July was jam packed!  
We also spent a weekend at my grandparents for their community days... something which I still have not blogged.  I couldn't do it.  We took some good pictures, knowing even back then there was a chance these would be the last of these moments.

We went to the Air Balloon Festival.  The kids had their first visit to Memorial Stadium for Husker Fan Day.  The kids FINALLY learned to ride their bikes.  We went to the fair.  And just like that .... it was back to school :(   We had our first run in with wasps... oh what a day it was!  We had one last day of swimming, at our favorite pool.  Oh how I'm going to miss swimming there with Grandma Siebert being here.  We started a month-long-back-to-school-sickness....and celebrated some cousin birthdays!

Hayden & Olivia learned how to do the monkey bars.  We got new dining room floors!!  Can you believe we've been in this house 2 years!!  We finally got healthy!!    Pumpkin patch season began & we had lots of random moments full of fun & love.

Pumpkin patch season continued, we went once, twice, three times!  We took some pictures in the park.  Took family pictures.  Had birthday party #5!!!   It was Halloween!!  They loved Trick-or-Treating!

We enjoyed the season's first snow!  The kids turned FIVE!!  I can't believe they really did!  They are just so big & grown up, its amazing!   We went to our first Disney on Ice.  Took Preschool School Pictures.  Thanksgiving happened, it wasn't easy.  

Really December has hardly been blogged.  Its been a rough month.  We managed to do some Christmas Prep & visit Santa.  We cried.  Opened presents.  Sang Christmas carols.  Got all dressed up.  And cried some more.  Life & love is so powerful.  

The last few years I've welcomed the New Year... with a bring it on mentality.  For the first time in a long time, I'm not ready for a new year.  The past few years I have celebrated the new year, anxiously awaiting the bumps that lay in the journey ahead, for they make you who you are.  I've tried to make it a habit to embrace change.  But this year, I can't.  I'd prefer to go back & do this past year all over again.  I'm not ready for the challenges 2015 is going to bring.

I think I will hang on to 2014 forever!

Christmas Prep...

With my grandma on hospice this year over the holidays... its been a hard season.  She's pretty much been my second parent.  And my kids are as close to her, if not more than as many people are to their grandparents.  She's been at everything, every activity, hosted every holiday my absolute entire life.  So life on the inside is pretty much chaos over here.  

I've tried my best to put on my big strong mommy face & make Christmas seem as Christmassy as I can.  We've talked a lot about Heaven.  And Olivia has asked me several times "Why there is water coming from my eyes."  But Christmas came... and went.  Cookies were baked.  Santa was seen.  Presents were opened.  Tears were shed.  Wine was drank.  And the first 4 weeks of the 4-8 weeks they gave my Grandma have passed.  

I don't know what I would have done without these 3 little beings in my life this month.  My grandma is the type of person to love you so hard it almost hurts.  I hope when my children are grown, they know they are loved as much as I know I have been.

Baking cookies for Santa... or mostly for us!
She was the only one brave enough to dig in & mix with her hands.
They rolled the balls for the Peanut Butter Chocolate Star cookies. 
And they did literally ALL the cookie cutting out.  I rolled & rolled & rolled.... I got to cut out TWO at the very end of the scraps.
And then it was on to decorating!  I put some frosting into some squirt bottles and it made decorating so fun!!  My frosting as a bit thick, & the bottles a bit cheap so it wasn't perfect.  But it worked pretty well.
They did SO good!!

And tree decorating.