Today Ivey and I will head to Emory. Specifically, we are heading to Emory's Department of Human Genetics. We are going back to hopefully find answers to a question that has materialized in the past few months.
Ivey's inner circle is aware of changes that have occurred and the steps we have in front of us in a search for an answer, if there is an answer.
In Ivey's last sedated procedure(s), an ABR was conducted. An ABR (Auditory Brainstem Response) tells us if her inner ear (cochlea) and the neural pathways for hearing are working. Over Ivey's lifetime she has had several ABRs. An ABR is the only accurate way we can test Ivey's hearing because of her limitations in communicating what she hears. Where Ivey has consistently maintained a mild/moderate hearing loss, that has now shifted. The latest ABR indicated that Ivey's hearing is now a moderate/severe hearing loss. Her right ear having a moderate loss; her left ear having a severe loss. Due to this, Ivey has a new pair of shiny teal hearing aids that have been adjusted to this new loss.
As you all know, Ivey is diagnosed as deafblind along side many other medical/physical diagnosis's that additionally impact her ability to access her world. I have had a few months to digest this shift in her hearing and how to compartmentalize it.
Overall, there is one primary question. "Will Ivey's hearing continue to decline?"
This one question presents three possible outcomes:
1. Ivey's hearing is stable and this shift was a blip on the screen.
2. Ivey's hearing loss is progressive and she will continue to loose her hearing until deaf.
3. There is no way to know if the hearing is stable or continuing to fade. Hallway.
There has been a flood of emotions with the presentation of these new possibilities. Once again we have been thrown into the Hallway. Waiting. Always waiting. Looking at the doors, anticipating which will open.
In the weeks leading to today, I have completed paperwork that pushed me back into the folds of my memory that I had tucked away. Back into the dark shadows of my mind with dusty boxes, each labeled, and placed on a shelf. Some of those memories tucked in those boxes had finally faded into a livable softness. The sting of digging back into the raw memories of her birth has been grueling. Scars were ripped open.
There was no way to open those pandora boxes without the ghosts of all the pain coming out. Memories of Ivey’s first breath, my boys, Matt's sweet face, Ray's voice when she came into this world and knowing something wasn't right just from a change in the tone of his voice, the first moment I looked at Ivey's sweet face, Matt telling me how he knew something was wrong, tears, fearing Tami leaving my side when her shift was over to go home to her own family, trying to push through the pain that exists in the aftermath of childbirth to make unclouded decisions, watching my 3 year old sing "You've Got a Friend in Me" to her in the NICU, my 1 year old at home wondering why this baby didn't come home, tubes, machines, fear, love, joy, listening to specialists, sitting in that damn NICU, wanting to be home with my 3 and 1 year old boys, making the decision on a DNR order should it be needed for our newborn, the swirl of family dynamics and no one really listening to the dire need to keep visitors from the NICU, or putting their own needs to see her or show her to others over the specialists urgent insistence that Ivey be protected from the germs and stress of the outside world, and the moment the decision was made to take her down to the hospital chapel, despite the risks, to have her Baptized because odds suggested she would never go home......it goes on and on.
For the past several weeks, I have sat in a dark hallway. I retreated. It keeps me on solid ground. Solace gives me strength. I tune out the world and focus. While here, I am on that emotional roller coaster that I am all too familiar. Parents like us are overlooked. I can say without a doubt, we experience a unique form of PTSD. We live through trauma. We live in trauma. We live knowing there will be more trauma. There is no respite. We watch our kids go through unGodly pain, often inflicted by our own hands, for their medical well-being. We endure seizures tearing through their bodies. We sit by their sides after horrendous surgeries like cranial vaults and La Forts, we watch them in pain, with no means to really help them. We, the mommas, are most often the final decision maker. As the saying goes, "The hand that rocks the cradle rules the world." We discuss medical decisions with teams of experts, our spouses, and even our child, but in the end, the mommas make the final call. We live with our decisions in a gray area, ever wondering and praying we made the right one. And now, I keep asking my self, "Did I miss something? Did I make a decision that caused her hearing to shift? Why didn't I catch it? What are we heading into? Can I do this?
I am prepared for today. I'm not sure what will be asked of me now, if anything. I have my basic knowledge from her initial genetic testing 15 ½ years ago, but genetics has transformed in the past 15 years. I hope that there has been some research on Ivey's little chromosome deletion, but she's rare, very rare, I don't think there has been anything that would have brought attention to her rareness to spark that research. And so, maybe Ivey will be the spark.
Next week Ivey will have an MRI to take a look at her brain and hearing structures to see if any information can be gleaned.
In the meantime, Ivey is soaring in academic areas that she was never supposed to go. She is smart. Her little brain is an actual example of brain plasticity. I would love to think we have done something right, but it's all Ivey. She is amazing.
I'll update as we go.
What can we all do now as we wait in the Hallway? Prepare.
Sign language. Braille. Map her world. Touch, so she recognizes you. If we do these things, it doesn't matter which door opens, Ivey is benefitted. All of these things will only contribute a make her world richer.
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Our request of you:
Decide on 2 or 3 things you would like to say to Ivey and learn to sign it. We sign words as we speak them. Ivey learns to sign by attaching specific hand movements to the words we say. Sign to her when you see her. I'll walk you through the "how". We can build your vocabulary from there. Just decide what you want to say to her. Don't worry about what you think Ivey wants you to say, say to her what you want her to know. (Ivey does not fingerspell, so ditch the ABC's and learn words)
If you want to send Ivey a message, write it out, text or email it to me. I will braille it for you. We will teach her to read the words.
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