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. 

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.

 





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

Saturday Quote of the Week:

This is Levi's favorite quote.

" Never, never, in nothing great or small, large or petty, never give in except to convictions of honour and good sense. Never yield to force; never yield to the apparently overwhelming might of the enemy.''  -Winston Churchill (source)

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.

Just read this in a discussion group today!

Very Exciting!!!!

FOR IMMEDIATE RELEASE
> CONTACT:
> Chris Danielsen
> Director of Public Relations
> National Federation of the Blind
> (410) 659-9314, extension 2330
> (410) 262-1281 (Cell)
> cdanielsen@nfb.org
> Blind Man to Take to the Road
> at Daytona International Speedway
> Baltimore, Maryland (January 28, 2011):
>
>
> The National Federation of the Blind (NFB), the oldest and largest
> organization of blind people in the nation, announced
> today that Mark Anthony Riccobono, a blind executive who directs
> technology, research, and education programs for the organization, will be
> the first blind
> individual to drive a street vehicle in public. Mr. Riccobono will be
> behind the wheel of a Ford Escape hybrid equipped with nonvisual
> technology allowing
> a blind person to drive it independently as part of a historic
> demonstration scheduled during pre-race activities leading up to the Rolex
> 24 at the Daytona
> International Speedway. The demonstration is set to take place at 11:30
> a.m. EST on January 29.
> Mr. Riccobono said: "I have been blind since the age of five, so I never
> got to try for a driver's license or drive a car without another person
> telling
> me which way to steer. The NFB's leadership in the Blind Driver
> Challenge(tm) has taken something almost everyone believed was an
> impossible dream and
> turned it into reality. I am looking forward to getting behind the wheel
> and demonstrating to the world that being blind does not prevent me from
> engaging
> in any activity I choose as long as I am able to get the information I
> need. This will be a truly historic occasion for my blind brothers and
> sisters
> and for America, and I am humbled and proud to be part of it."
> Dr. Marc Maurer, President of the National Federation of the Blind, said:
> "The sight of a blind individual driving a vehicle without assistance from
> a sighted
> person will shake the foundation of public misconceptions about blindness
> and blind people by showing that even tasks that are thought to require
> vision
> are possible if a blind person has access to information in a nonvisual
> way. Vision is not a requirement for success. Capacity, imagination, and
> determination
> are all that is needed, and blind people have all of these qualities."
> Mr. Riccobono was the first director of the Wisconsin Center for the Blind
> and Visually Impaired, a state agency that serves Wisconsin's blind
> children.
> Since coming to the headquarters of the National Federation of the Blind
> in 2003, he has spearheaded many initiatives, including educational
> programs designed
> to engage blind youth in the fields of science, technology, engineering,
> and mathematics. He currently serves as executive director of the NFB
> Jernigan
> Institute. He and his wife Melissa, who has worked as a school counselor
> and serves as president of the Maryland affiliate of the NFB, live in
> Baltimore
> with their two small children, Austin and Oriana.
> The NFB Blind Driver Challenge(tm) is a research project of the National
> Federation of the Blind Jernigan Institute-the only research and training
> facility
> on blindness operated by the blind. The Jernigan Institute challenged
> universities, technology developers, and other interested innovators to
> establish
> NFB Blind Driver Challenge(tm) (BDC) teams, in collaboration with the NFB,
> to build interface technologies that will empower blind people to drive a
> car
> independently. The purpose of the NFB Blind Driver Challenge(tm) is to
> stimulate the development of nonvisual interface technology. The Virginia
> Tech/TORC
> NFB BDC team, under the direction of Dr. Dennis Hong, Director of the
> Robotics and Mechanisms Laboratory at Virginia Tech., is the only team
> that has accepted
> the challenge. The team uses the ByWire XGV(tm) developed by TORC
> technologies as the research platform for the development and testing of
> the nonvisual
> interface technologies that allow a blind person to drive.
> For more information about the NFB, please visit
> www.nfb.org.
> For our digital news release about the Blind Driver Challenge(tm) and the
> debut of the BDC car at the Rolex 24, including audio and video clips for
> television
> and radio, please visit
> www.DigitalNewsRelease.com/?q=NFB_CarKit.
>
> ###
>
> About the National Federation of the Blind
> With more than 50,000 members, the National Federation of the Blind is the
> largest and most influential membership organization of blind people in
> the United
> States. The NFB improves blind people's lives through advocacy,
> education, research, technology, and programs encouraging independence and
> self-confidence.
> It is the leading force in the blindness field today and the voice of the
> nation's blind. In January 2004 the NFB opened the National Federation of
> the
> Blind Jernigan Institute, the first research and training center in the
> United States for the blind led by the blind.