Addie Update: My New Testament Baby

"If any young men come for Mary or Kitty, send them in, for I am quite at leisure.” So says Mr. Bennett , character from the book Pride & Prejudice, as he learns of yet another young man impacted by his lovely daughters.

 “If any organ systems come for Addie, send them in, for I am quite at leisure.”So says Mrs. Wightman, character from the Book of Life, as she learns of yet another organ system impacted in her lovely daughter.

A few weeks ago, Addie met with a pediatric ophthalmologist to follow up on her October eye exam.  Because many NICU babies need high levels of oxygen support, there is always potential concern for oxygen damage to the eye leading to visual impairment.  At both of these exams, Addie’s eyes passed structurally. Yahoo--free and clear!  

Hardy, har, har . . . . 

1st time in a Doc's chair! . . . well in my car seat on a Doc's chair . . .

Our first clue that something wasn’t quite right came as the eye tech dimmed the lights and turned on this whirly, neon light-up spinner.  No response.  The tech took the eye scope and shined the light in the dimness trying to get Addie to follow it with her eyes.  Again . . . no response.  My heart started sinking. The doctor came in and tried as well.  Nothing.  Addie’s eyes were moving from side to side and up and down, but they were not focusing.  The doctor explained that she has ‘roving nystagmus’.  Now we knew she had nystagmus in relation to seizure activity in the NICU.  Her eyeballs would jerk from side to side during seizures.  But—we did not know that her eye movement since then, which consists of constantly shifting eyes---as if she’s looking all around the room—is still seizure activity and not exploration of her surroundings. Additionally, Addie is very far-sighted.

A or B? B or C? C or A?

And on top of  "dancing eyes", Addie met with a vision specialist to rule out something called Cortical Visual Impairment (CVI).  This is a way of saying, “Everything works structurally, but the brain isn’t registering the input.” The good thing about CVI is that often with dedication to vision therapy, this type of blindness can be overcome—the brain can be exercised towards understanding the visual input. The specialist from the Utah School of the Deaf & Blind determined that Addie does qualify for visual therapy.  She will now be coming every week to teach us how to help Addie learn to see.

The therapist gave us a demo of what it is like to be Addie.  Look at this picture.  What do you see? 

Blobs and blurs?  Your brain has no context  to decipher this image. Blur and roll your eyes over and over as you look at this picture.  This may be what it is like to look through Addie's eyes.

Now for therapy: if I turn the picture to the right, and you look at it without blurring or rolling your eyes . . . 

You may still not see anything.  However, if I prompt you and say, here is an eye . . .and here is another eye (those black dime-sized circles just above the center of the page) . . . here are the ears just up from the eyes. . . the face of this animal is long and white. . . the nose is at the bottom middle of the page . . . you are seeing the head of this animal . . . it is a cow.  Can you see it now?  Once you focus and discern the cow, you’ll never go back to seeing the blurs and blobs. You have context for the image. 

For Addie’s therapy, we attempt to give her context for the things she sees.  For example, we use a flashlight to illuminate one object of one color.  We move it in front of her eyes and shine the light on it to help her discern it.  If she registers that she sees it, we lift her elbow to touch it, so she can feel that something is there and explore the sense of touch to reinforce her vision. To help her overcome deafness/dumbness, we put hearing aids in her ears and tell her what she is seeing and touching. Additionally, we give her context clues by touch to tell her, “medicine time” “diaper time” “bath time”, etc. To overcome her lameness, we massage her muscles and compress her joints. We clasp her hands to objects and pull back to give resistance to her muscles.  We push her legs down into the mattress to put some bearing weight upon them. We hold her head between our hands and let her neck bobble to develop strength in her neck. With time and with persistence, Addie may learn to overcome her blindness, deafness, dumbness, and lameness. 

"Dad . . . Big Bird's laughing at me!"

Addie is my little "New Testament" baby.  I feel much compassion and camaraderie with those parents of the New Testament, who with so much hope and so much faith brought their children to Christ to be blessed, to be healed. I'm not the only one feeling that hope.  Last week, my 11-year old dreamt of the KBYU TV show Random Acts (in this series, the hosts of Random Acts show up for a surprise visit at someone's home and proceed to make life easier through generous service and kindness). Adam reported, "Mom--in my dream, Random Acts came to our door, and they brought Jesus. And He healed Addie."

I wish Random Acts had connections like that! I do know that someday, like those parents of old, I will carry my Addie to my Lord.  There, I will "[beseech] Him greatly--I pray thee, come and lay thy hands on her, that she may be healed" (Mark 5:23). And my Lord will again make "the blind see, the lame walk, . . . the deaf hear" (Luke 7:22).

But . . . in the meantime . . . back to therapy.   "Aww Mom . . . do I have to? . . . "