As usual, when I’ve let time slip by between updates, I need to start in the present and then see what I can drag out of my shadowy memory. So, let’s start with today…
We had an appointment with an audiologist, because at a check-up with Abbie’s ENT last week, lots of fluid was found in her ears. Dr. T. wanted to do the audiological testing before determining whether to place PE tubes in Abbie’s ears.
When the audiologist called yesterday to confirm the appointment and talk specifics about the testing, she mentioned “Remember when we last did the ABR testing (2004 or 05), it was determined that Abbie has Auditory Neuropathic Spectrum Disorder (ANSD)?’
Ummmm….no, I didn’t recall anything being wrong with her auditory nerve, and for years have found comfort in at least one of her senses being intact. Ugh. This unexpected news pushed me further into a pit I’d been slowly sinking into. The rest of the day was spent researching this relatively new diagnosis, which was formalized in 2008, I believe, at a meeting in Como, Italy. Thoughts of that beautiful place were momentarily distracting, but my heart was still pierced.
My research didn’t show much, as like many “spectrum disorders”, information is broad and not particularly useful. This morning, however the audiologist said she needed to perform certain tests to ensure the ANSP was not progressing.
What?? This whatever-it-is can be progressive leading to profound deafness???
First came the tympanogram which showed that her right ear is completely full of fluid, while her left is is also affected, but not as completely.
She then tested the left ear, and was able to get the results we were hoping for, despite the fluid. Abbie can hear — as we assumed she could. But, all this fluid does explain why sometimes it seems as if she is distracted during school, working on the computer, or interacting with other people. We all sound like Charlie Brown’s teacher to her!
I scheduled the PE tube surgery, along with audiological testing that is done under sedation, for the early morning of November 11. I fly out that night for a special retreat in Washington State — only for moms of near-drowning survivors who are coming from across the country. (Woo-hoo!!!) I am confident that all will go smoothly, and that, in fact, Abbie will feel a lot better once it is over and all that pressure is relieved.
That whole ear situation leads me to an example of Abbie’s improving communication skills. The day after we visited her ENT, she slept a lot in the morning. Around 3:30pm Genevieve came into the kitchen and said, “I need you right now.” This is rare, and I was immediately concerned.
Abbie was laying on the massage table bawling her eyes out. She never does this unless she is injured — as in broken femurs or torn ligaments. I knew that she had not done anything that day that would have exposed her to the risk of injury, so I was stumped.
I said to Genevieve, “Tell me exactly what happened.”
As Abbie continued to wail, Genevieve told me that she had carried Abbie from her bed to the massage table with no complaints. Then, she picked her up and took one step toward the hyperbaric chamber, at which point the crying commenced.
Aha! Given what Dr. T. had seen in her ears the day prior, I had an idea what was causing the fit.
“Abbie, does diving hurt your ears?”
More crying, but blinking yes in response as well. Then, more crying.
“OK, OK…we are not going to dive. You are not going to dive today. I will rock you instead. Let’s go to the rocking chair instead.” I had to keep reassuring her until she could hear me through her distress. Once she understood, the crying ceased immediately.
I smiled as I rocked her. Kissing her tear-stained cheeks I said, “Abbie you knew what was going to happen — you knew you were about to go diving, and you knew it would hurt and you found a way to tell us ‘NO!’ That is called communication. I am so proud of you!”
Out came her dimple. I enjoyed that while also relishing the realization that she was able to anticipate and communicate. No more diving for now. Lots more rocking.
The second big thing is how she is doing with her communication switch. As I mentioned before, she is now using a joystick with her right hand. Because she likes to roll her hand and arm to the outside, we have been using flexible straps to help her keep her hand on the switch. Her school OT wanted to write an IEP goal that Abbie would hold her hand and arm in a neutral position for five minutes. I replied that we needed to start measuring in seconds, not minutes.
Silly Mom (That is my new name, for as often as I earn the moniker)
When the school therapists were here, I placed the joystick in her hand, and went to look for the straps. When I came back with them, she was holding on and using the switch just fine by herself. So, I set the straps down and watched.
Fifteen minutes. All by herself.
And then – she got tired and let her arm roll to the outside, which pulled her hand off the switch. We were all so excited about how long she had held that position, and were talking about what to do next that we didn’t see her roll her arm back over and place her hand back on the joystick. All by herself. I cannot tell you how momentous that little movement was.
She continues to enjoy working on the computer, especially with a program called “Choose and Tell”, in which she gets to choose the hero of the story, the mode of transportation, the destination, and then the paths to follow and doors to open. She is exceptionally picky about the doors she chooses, because one hides a treasure and one hides a monster. She remembers which one is which after she’s built a certain story once or twice, so always wants to make sure she finds the treasure.
I watch her, and realize that I have already found mine.