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

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.

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.

 





My Angel





Every winter we watch the snow fall and pile up in its big fluffy piles. After bundling up in our warmest, we venture out to play in it.  This year was no different, except we had an extra bundle…a snuggled baby in a snowsuit that made her look like a starfish.  Elsa was not happy in the least to be mummified for another strange adventure but as soon as the sled began its journey a silent curiosity quieted her down.  Have you ever listened to the snow crunch?  Or felt soothed by the sled gliding across the slippery snow?  Have you felt the piercing cold of snow on your lips?  Or let the sounds of your family resonate through your being?  









I wish I had a picture of big brother Milo pulling her around the yard, but life sometimes get in the way of picture taking.  It is sealed away in my mental scrapbook though...a moment when it became clear to me that Elsa is already living a life more exciting and rich than many have ever known.



She can light up a room with her smile, and her giggle can melt anyone’s heart.  At first glance you can tell she is different, I am sure the glasses give it away.  But the difference is deeper.  The difference is wonderful, opening up the world around her in a whole new way.  Already she has taught me so much.  It’s like my entire life all of my senses have been dulled and with the arrival of this little angel an awakening has begun.