Welcome to the Team Avery Website!

In the spring of 2008 my then 19-month old daughter Avery lost most of her sight to congenital cataracts.
The Delta Gamma Center for Visual Impairments in St. Louis was there for our family in our greatest time of need; teaching us how to alter our lives to incorporate a visually impaired child. To help them continue helping other families like us, we have formed Team Avery/ Team Margaret. ***To read about Avery's story, go to the Archives and visit Blog "Avery's Story" from January 24th, 2010.
Sunday, January 24, 2010

Avery's Story

Pour a cup of coffee, sit back, and make yourself comfortable. This is going to be a long post...

Other than her early onset asthma, reflux, and peanut allergy, Avery was just like other babies her age. She loved to take walks, ride in her "little car," read stories and play in swings. One of her favorite things to do in the Spring was to take walks and pick "flowies."

Our little first born Princess would demand that you stop the stroller. She'd then jump out and run over to the dandelions. She would then say, in her sweet 1 year old voice, "Flowie. Help ping." Avery tried to pick as many as she could. By the time we finished our walk, she'd have a full bouquet of dandelions.

In late April of 2008, we noticed a change in Avery. She became a lot more clingy, wanted to be carried around constantly, and would lay on the floor and just cry. She stopped "reading" her books by herself. At first I just thought she wasn't adjusting well to Mama's pregnancy (I was 5 months pregnant with our son at the time.) But it just continued to get worse. The most haunting thing about that period was how silent our walks became. We would pass by fields of dandelions, but Avery wouldn't even turn her head in their direction.

Here she sits on the floor, as she did most days during the weeks leading up to the diagnosis. Note the distant look in her eyes & the complete reflection of the flash in her pupils. That absence of red reflex is a direct result of the cataracts.

It wasn't until she started holding books right up to her face and regressed to crawling that we took her to see an opthomologist. We hoped against hope that it would be just a behavior issue, but deep down we knew it was a vision problem. That feeling certainly didn't dampen the sting of the words, "your daughter is essentially blind." She had bilateral, fully oppacified cataracts. She could only distinguish between light and dark. Like looking through a window that had white paint all over it.

Despite having had tubes placed in both ears a week prior, Avery was scheduled for her first of 2 surgeries quickly. Her right eye lens extraction would be the following week, followed two weeks later by the same surgery on the left eye. The plan was to implant an artificial lens at the time of surgery. This would avoid the need to wear thick cataract glasses, although glasses would always be essential for her from now on.

After over 3 hours of waiting, the telephone in the surgery waiting room finally rang for us. We were told that, despite their best efforts, they could not safely implant the synthetic lens. We were heartbroken...and we still had at least one more surgery to go. But we didn't know the worst was yet to come. For an entire summer, we had to hold Avery down and put drops in her eyes 4 times a day. We felt like we were torturing her, yet it was for her own good. It was hell. Sitting on her stomach, holding down flailing arms and legs we'd hear the most treasured thing in our life screaming out "All done, all done!"

For the first 3 days post-op, Avery wouldn't let us put her down. She even slept on our laps. Her Mimi was able to come up from Birmingham, AL to help Avery (and us) get through this surgery and the immediate aftermath. Her Yaya and Papa visited after that to lend a hand. For the most part though, we were utterly alone. We live in St. Louis, 10 hours away from "home" while my husband completes a 6-year surgery residency...during this time it really hit hard how important family is. Brian, Avery and I struggled daily; we also learned the hard way who our true friends are. I'm immensely grateful for the angels I've met here in St. Louis: Maggi, Sara, Billie, and Jody, I'll never be able to thank you enough.

Because she had no lens to focus the light on the back of the eye called the retnia, light entered Avery's eye and bounced everywhere, causing casual activities of everyday living to be extremely bright and painful. She spent the majority of her days inside, listening to music on her CD player. Despite it all, she continued to try to be a toddler and test Mommy's boundaries. It's unbelievabley hard to discipline somebody so adorable, particularly with that giant patch on her eye! Avery got away with a lot that summer :-)

We did everything we could to improve her life that summer. We got huge balloons that she might be able to see, danced to music whenever she felt the urge, sold furniture to clear rooms for her to run with her beloved "stewy" (stroller, which she used as a sort of walker to prevent her from running into things) and even got a patch for her babydoll.

Two weeks after the first surgery, the other eye was done and the eye drop regimen started anew. As time passed, avery was able to venture outdoors, but was still hurt by bright light. We still tried to go outside, but just ventured out in early morning and early evenings. Despite being legally blind, Avery's spirit refused to be held down. We took her to smaller & less frequented parks so that she could move about slowly. She quickly memorized the layout of the park and soon was climbing, swinging & sliding, though not to the degree of her peers.

Finally, the day came to get Avery fitted for cataract glasses. During that waiting period, Avery got to the point where the patch was no longer required. So, she exchanged it for a cool set of shades. She wore them almost full time, often accessorizing with a stylish hat, and occasionally even sleeping in them.

Now approaching the end of June, like any parent would do, we began to think and plan for her 2nd birthday. We hoped she would have her glasses by her 2nd birthday party. Sadly, she wouldn't get those babies until almost 2 months later. That didn't stop her from being a birthday princess!

When the glasses were finally ready, we began the next battle... getting her to wear them! At first, she was scared of them. Slowly but surely though, she learned how much brighter her world was with these glasses, and we couldn't get her to take them off. She sleeps in them to this day. Initally we tried to make her take them off at night, but that first time she woke up screaming "I'm scared, I can't see!" we cracked. The first place we took her was Grant's farm to see the petting zoo. She was very amused by the goats!

Contrary to popular belief, having cataract glasses did not mean Avery was "fixed." Those of you who wear glasses know that your vision may be perfect when you look directly through your lenses, but sight below, above, or peripherally is compromised. Avery continued to have issues with depth, mobility, perception, as well as the delays I have mentioned earlier. But fortunately for us, that's where Delta Gamma therapists came in to help. Although I will get to that another day...THIS blog has gone on long enough!


Gail said...

What a little trouper! She manages to continue smiling through it all. (along with her brave, loving parents!)

claire.straight said...

She makes me cry because she is so brave.

Michelle aka Mommy said...

WHAT a story. (i obviously knew the story, but not to those depths). WHAT an amazing & strong little girl! WHAT an extraordinary mommy & daddy!

wanted you to know too, that we (including my mom) will all be "running" (more like walking in our case) with you and Team Avery!


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