Sunshine in the Darkness: TEAM AVERY

Hello Sports Fans!  Welcome to a special edition of the Team Avery blog.  I know it's not "Team Avery Season," so obviously I have an important reason for getting back on the horse after five months of not writing.

The summer has been eventful, to say the least!  I'm now writing from our new home in Macon, Georgia.  Yes, we are still owners of our St. Louis home.  No, this is not a good thing.  Our move started off with a bang, to say the least!  The week prior to our leaving, Auden had a febrile seizure (ER visit #1), Auden broke my nose (ER visit #2), and Avery fell out of bed and fractured her clavicle (ER visit #3).  This all made for a very interesting drive down to Georgia, where everyone but Brian was sucking down Advil like it was our job.  We survived and are all fine now.  Avery celebrated her fourth birthday this July...for the third time.  It's safe to say that she now thinks she gets a birthday party once a week.

So far, all I can say about Macon is that...it's hot.  Like, insanely, 100 degrees at 9pm hot.  The kids and I don't have a wide variety of activities to do right now, so we spend much of our time in the inflatable baby pool outside.  We live a little out in the country, and sometimes we even see deer in the yard - which Auden refers to as "puppies."  Avery went to a day camp at her new school; other than that, there is a whole lot of TV going on.  

Avery's health has been...well, typically Avery!  After a short break where we had weaned her off all her asthma medications, she suddenly had a bad episode that was difficult to get a handle on.  Thus she is back on her nebulizing routine and prescriptions.  We also saw a new pediatric neurologist for a second opinion on tests that had been done in St. Louis.  Avery now officially carries the diagnosis of Pervasive Developmental Disorder Not Otherwise Specified (PDD - NOS) and Aspergers (on the mild side of the autism spectrum but NOT autism).  She will resume Occupational Therapy for this and developmental delays this Fall.  Avery also starts preschool at Stratford Academy on August 19th - go Eagles!  We can't wait to see our cutie in her little plaid uniform.

Now on to the big news.  On Tuesday August 3rd we drove up to Emory in Atlanta to visit Avery's new Ophthalmologist, Dr. Scott Lambert.  Besides being a pioneer in placing Intraocular Lenses (IOCs) in infants as well as one of the top specialists in the country for pediatric congenital cataracts, he is also a really nice guy.  Brian and I were immediately impressed by how confident yet humble this man behaved.  Avery's direct quote:  "I like this doctor!"  Let me assure you, those words have NEVER come out of her mouth before!  Bottom line is, we trust this man to take good care of our princess.

After the exam, the consensus was to again attempt placement of IOCs.  If you've ever chatted with me about our situation, you know that Avery went through this surgery once, at age 22 months, when her cataracts were first removed.  At that time, her Ophthalmologist hoped to remove the diseased lens from her Right eye and then replace it with a synthetic lens during the same surgery - to be repeated on the Left eye.  After a few hours in the OR he judged the procedure too dangerous given the anatomy of Avery's eye...a decision we were behind 100%!  Two weeks later her Left cataract and lens were removed.  Thus Avery has spent the past 2 years aphakic (without lenses) and sees only light and color without correction.  She does not have any peripheral vision and struggles with depth/height changes.  We have been extremely blessed that she had the option to wear glasses that function as a lens (aka, her cataract glasses). These allow her between 20/50 and 20/70 vision...when they are clean, that is!  

So this is the plan:  Avery will go into surgery at the Children's Hospital of Atlanta this coming Thursday, August 12th.  Once she is under anesthesia, Dr. Lambert will examine both eyes.  His goal is to fix a scar on Avery's Left pupil (the one shaped like a diamond - we call it her "cat eye") AND to place a synthetic lens.  If this first surgery (on her Left eye) is a success, Dr. Lambert will operate on Avery's Right eye within 2 to 6 weeks. She will wear a patch for weeks while she recovers.  With these IOLs, Avery will still not be able to accommodate and will rely on bifocals to read and sharpen her distance vision.  However, IOLs decrease her risk for glaucoma, and she will also regain peripheral vision.  She will be able to carry out activities of daily living (e.g., taking a bath) and swim without glasses. Best-case scenario: IF the surgery is a success, Avery will no longer be totally dependent on glasses!  

Obviously I am joyful, albeit cautiously optimistic.  It seems too good to be true!  And let's face it, we have already been through this roller coaster once.  I remember being in the hospital gift shop with Brian and my mom during Avery's first eye surgery.  We were so hopeful; we bought her a big bright pink and purple flower pinwheel.  Everyone was so excited to think that Avery would be able to SEE it once she recovered.  Then we got the phone call that the lens was removed without any replacement.  Avery came out of surgery as blind as when she went in.  The pinwheel sat my diaper bag as we scrambled to give our girl a present that didn't require vision.

I've been through many different emotions this week.  I'm so happy that Avery gets a second chance!  She has the opportunity to regain a major portion of her sight.  Our family is so incredibly blessed to have this hope.  However, the thought of watching my sweet daughter go through more surgeries is also absolutely heartbreaking.  These will be surgeries number 5 and number 6. Granted, we have friends who have been through so much worse it's astounding.  I feel like a baby for doing anything other than cartwheels!  But the thought of more eye surgery has taken me back to the darkest time of my life, a place I try daily to forget about.  I can't help but see Avery's little baby face when she was a 19 months - looking at me and not seeing me.  The crawling, the blank stares. When I lie in bed at night I hear her frightened screams.  I think of all the therapy it has taken to keep Avery from falling behind; I think of all the struggle it took to get Brian and me to a place of acceptance.  While I am ecstatic at the possibility of success, I'm not ready to relive the letdown we had two years ago.  

The other strange reaction I've had is guilt.  I feel guilty that my daughter is able to have a second chance at sight, particularly when we know so many kids whose vision problems are growing worse.  Not to say that they do not have full, normal lives because of visual impairment - they do.  But it is painful to watch your child struggle SO much to do things that others take for granted.  I wish that every parent and their visually impaired child had the same opportunity we have.  Which is why, even if Avery's vision is improved, I will continue to work to raise awareness (and funds) for programs that support these kids.

When we told Avery about the surgery, we only explained that "the doctor just needs to work on your eyes."  At first she screamed "my eyes are fine!!  NOOOO!"  Today however, when I brought up the subject again, Avery assured me:  "Don't worry Mom.  I'm a brave girl."  Too true.

There is a song by Celine Dion we used to sing to Avery when she began going through her eye trouble.  For some reason the lyrics gave Brian and me comfort then, and have helped me find strength now.  I've found myself lately humming it to Avery.  Please think good thoughts for us this Thursday; say a prayer if you are religious.  We'll keep you posted...

I was waiting for so long 
For a miracle to come 
Everyone told me to be strong 
Hold on and don't shed a tear 

Through the darkness and good times 
I knew I'd make it through 
And the world thought I had it all 
But I was waiting for you 

Hush, love 

I see a light in the sky 
Oh, it's almost blinding me 
I can't believe 
I've been touched by an angel with love 
Let the rain come down and wash away my tears 
Let it fill my soul and drown my fears 
Let it shatter the walls for a new, new sun 
A new day has...come