not so trivial pursuit

Last week Elsa got new glasses.

She is asserting her 

rapidly growing independence 

by chucking them across the room 

every 5 seconds.

So if you are wondering 

what we do with our days,

We have entitled this stage of life:

PURSUING PURPLE PASSION

Pickin' time!

Thanks Larry and Suzanne 

for sharing your bounty!!!

Update on Elsa...

It has been a while since I updated you all on Elsa's vision.  

Looking back at where she started,

 this girl has made incredible progress.

Since March of this year Elsa has changed in so many ways,

just like all kids do the first year.  

But the most exciting growth she has had

is with her vision.

In March, when the teacher came from the Anchor Center,

she thought Elsa could see 18 inches.

Now Elsa's vision measures in feet!

I don't know how much detail she can see at a distance 

but I am sure that she recognize things up to 6 feet away.

She got new specs earlier in the year and they helped tremendously.

chowing down on her birthday!

When Elsa was born she never gazed into my eyes 

like a typical newborn.

I would say that of all the stresses of her visual impairment, 

that one hurt me the most.

But this year on the Fourth of July, 

Elsa gazed at the fireworks,

then turned around and deliberately looked into my eyes.

I will never forget that moment.

Watching fireworks could be her favorite new pastime

Since last year, Elsa's eye pressure in her 

left eye continued to increase
putting her at risk for glaucoma.

So earlier in the summer, surgery was done to

 slow the production of fluids

and decrease the pressure.  

She still has to do eye drops

 a few times a day, 

but the surgery was successful.  

We will keep her pressure monitored every 3-4 months

with an exam under anesthesia.

Last month we took Elsa once again to The Children's Hospital

for a surgery to uncross her eyes.  

It is amazing to me the knowledge and 

skill that her doctor has used for the good of Elsa. 

We have to patch Elsa's stronger eye a few hours a day 

to train her weaker eye.  So far the results are pleasing.

So thanks for the continued prayers for Elsa.

She is a strong and curious girl with

not a fear in the world.

Top Ten

Elsa just turned 10 months!!!

i know, i know, it flew.

In celebration, she thought it would be fitting to share her 

top ten toy list. 

This could be great for any baby's first year,

but very well suited to a baby with limited vision. 

here goes:

1.Canning jar rings: Simple. Easy to hold.  Accompanied with the sound of the simmering pots of water, and the scent of a blossoming garden.  Also works well to exercise family.  Simply drop repeatedly and they do toe touches.

2.Lights. Lights. Lights.  My mom and dad realized I liked light up/noisy toys and overdid it a bit at Christmas.  Can you say arcade?? My favorites are the string of battery operated stars, a glow stick flashlight, and a strand of rope lights.

3.Rody.  My mom thinks I like it cuz it looks so cute, but it is really fun to sit on and bounce. 

4.Rubber lizard.  I think it grosses people out but I really love to chew on lizard toes. What? Like you don't have a few issues??

5.Keyboard.  I could sit here for hours.  Usually I try to focus on composing and bang out a few songs, but sometimes I really get into it and can't help but bust some moves.

6.Gym. When I was just a kid, I played with this all.the.time.  What I loved the most about it was that the toys never fell away where I couldn't see them. 

7.Swing.  This is my pure joy.  Try closing your eyes sometime while you float front to back and feel the way your entire being awakens.

8.Lay's snack chip bag. My teacher gave me a bag and it felt so amazing to crush those chips into nothingness. There was this great crinkling sound.  Man I loved that, I played with it tons! Until my big brother Milo stepped on it and chip pieces exploded across the living room.  I also was a big fan of the Sunchips bag. Unfortunately I heard they discontinued the packaging...I just cannot understand why???

9.Lil Tykes Tractor. Lately I discovered a fancy way to travel.  It's a bumpy ride and every once in a while I honk the horn.  Mom can only push me around for a little while before she makes some lame excuse about a broken back.  Oh well, soon I plan on stretching my feet to the ground and hitting the road on my own.

10.Squirty water star.  My most recent acquisition is this incredible floating bathtub toy.  You just push a button and there are lights and colors and it spins all around the tub.  I am in love. 

S*A*T*U*R*D*A*Y*

(clap,clap)

Totally Fantastic.

Spent the morning ALONE with Levi

(that never happens)

We went shopping for some new glasses

and wandered around Wally World.

Josi (the angel child) stayed home taking care of Milo and Elsa and when we got back she had even cleaned the house.

Later we picked up a friend of Josi's and spent part of the

afternoon tie dying. 

I had never done it before,

 what a blast!

You can buy a kit of 3 colors with dispenser bottles and rubber bands for less than $10 bucks.

If you don't think you have enough rubber bands, just stop buy the local grocery store and a cool chick that works there will give you a handful.

(Judy u rock!!!)

Finished off the day playing under the trees with Milo's new set of construction tractors that his big bro brought him from town.  We built a road and watched Elsa sample dirt and twigs.

If I could bottle the love I felt today, I would.  I would open it when I am older and greyer, and just bask in that familiar aroma of my children.

To Levi, Josi, Milo and Elsa:

"May today there be peace within. May you trust that you are exactly where you are meant to be. May you not forget the infinite possibilities that are born of faith in yourself and others. May you use the gifts that you have received, and pass on the love that has been given to you. May you be content with yourself just the way you are. Let this knowledge settle into your bones, and allow your soul the freedom to sing, dance, praise and love. It is there for each and every one of us."

— Mother Teresa

Elsa's Entourage

When the reality about Elsa’s vision had begun to sink in, her first surgeries finished, her glasses perched up on her cute little nose; I had the overwhelming feeling that I was going to need some help. 

And help we have received. 

Elsa has some wonderful people in her life to keep us on the

up and up.

Two vision teachers visit her every week to shower her with loads of fun and toys, and encourage her to use those pretty eyes.  For her it means that she will be exposed to different ways of learning.  For me it means comfort that someone with expertise is keeping tabs on things and we won’t miss out on some necessary milestones for our girl.



Elsa's teachers have taught us that by
adding bright colors to Elsa's tray provides
the contrast she needs to see her cheerios.





Another angel that visits us is the occupational therapist.  She comes with a smile every other week to check in on Elsa’s progress and rally us on to the next acrobatic event. I'm not sure we would have survived tummy time without her.

We also are very fortunate to have a visitor every few months from the Anchor Center, a preschool designed especially for visually impaired kiddos. She drives for hours to impart her wisdom, bringing all kinds of treasures for Miss E. to experience.

We have learned that touching a variety of things
helps Elsa get comfortable with the world around her.

Organizing it all and keeping track of the plan, is a wonderful person that has a real heart of gold.  She is always available to help.

 

The knowledge and experience that this entourage brings is amazing.  They have each helped in their special ways, sharing practical ideas, giving us a kick in the pants to keep moving forward, and always supporting Elsa with their sweet spirits.

 





O*R*E*O*

Another great first in the life of Elsa.

Numero uno OREO.

O

R

E

O

Elsa's Eyes

Today she babbled her head off. 
And if she could get her body to cooperate she would be thrilled to race across the room. 
She loves music. 
She is starting to wave bye bye and lift her arms when she wants to be held. 
Every single time she takes a bite she says "mmmmm."

It doesn't seem that long ago that Elsa was a tiny new born baby...well tiny in our giant Kurtzer baby world...weighing in at barely over 8 pounds.

She let everyone know her opinion about being born with the loudest protests of any of my babies and for the first few months held a grudge.  But things have settled down a lot for all of us and now she is most content.

Elsa's life has been a roller coaster ride.  If I could pour out every emotion that I have felt during this short time, it just might fill up the world wide web.  Gratitude, fear, joy, and sorrow...a million others beside.  But as the reality of who she is becoming emerges daily, a steady peace takes rest in our hearts.

The first sign of issues with Elsa's eyes was during our Doctor's routine exam before we would be dismissed from the hospital.  He gently checked her over from head to toe, then spent a lot of time trying to get a good red eye reflection by shining a light into her eyes.  She really clenched those tiny eyes tight and didn't give him a good view, but he told us he was concerned that Elsa had cataracts in both. 

We went back in a few days, and met with our doctor and his brother who is an opthalmologist.  Our fears were confirmed and we were referred to Children's Hospital within the week.

Our trip there led us to Dr. Braverman, who indicated that Elsa did have very dense cataracts that if not removed would result in complete blindness.  Surgery was scheduled just after she turned one month.  At that time they took out the completely white lenses in the back of her eyes, allowing light to get back to her optic nerve. Elsa is aphakic which means the lenses were not replaced. She was also diagnosed with microphthalmia, meaning her eyes were very small and underdeveloped.

The way her eyes are put together, along with the nature of her eye surgeries, Elsa is at risk for glaucoma.  She has to have an exam under anesthesia every three months.  The last exam showed that some cells from her cataract lens had regrown and blocked some of her vision in the left eye and there was a lot of scar tissue.  A few weeks ago they took that out and we can see lots of improvement.  We go in again this week to get the right eye cleaned up. 

We are so thankful for the vision that Elsa has and how it continues to develop.  With her glasses on she can see about eighteen inches in front of her.  Lights are easier for her to see, and she checks out every fixture in every place we go. 

It is hard to predict how much Elsa will see as she grows up.  As our doctor has said, "That is the million dollar question!"  But we hold on to the hope that medical developments are happening every single day, knowing full well that life is so much more than what meets the eye.

Saturday Quote of the Week

  "Vision is not a requirement for success. Capacity, imagination, and determination
are all that is needed, and blind people have all of these qualities."

-Dr. Marc Maurer, President of the

   National Federation of the Blind

descriptive movies for the blind

Much to someones delight...

and to the credit of one awesome big sister with incredible Netflix management skills, Toy Story 3

has been monopolising available spins in our DVD player.

This morning when I started it up, I noticed a language selection menu.  There was of course good ol' English, Spanish and French, but another choice caught my eye....English descriptive version.

Nine months ago, I would have zipped through the language selection, hit the play button and let the techno nanny manage the little one while I delved into my to do list. 

But today I had a sweet cooing someone to give me good reason to take note.  So I picked the descriptive version.

It was amazing to me that someone had taken the time to describe every non-verbal action that crossed the screen.  It was like hearing the storybook version, both poetic and enlightening.  Captivating my mind in such a way that I could hardly believe my ears.

Toy Story 3.

  Narrated in a way that my sprout of a couch potato could carry on with a family tradition. 

 

There has been a big part of my mind and heart worrying about whether Elsa's visual impairments would prevent her from getting all of the education she would need. I feared that I might miss out on giving her every boost for success, hardly even considering how she might be simply amused.

So upon seeing something so well thought out, casually presented, and easily accessed to give her great entertainment, I was sort of stunned.  There are really people doing all they can do so that my little chicky babe can even sit back and enjoy the show. 

Awesome.

Music speaks...

Music speaks what cannot be expressed,

            soothes the mind and gives it rest,

  

heals the heart and makes it whole,

flows from heaven to the soul

-author unknown