The day after Leonid's lengthy presentation at the Pacific Rim International Conference on Disabilities, we met him and Mark (ABR researcher) at the rehab department where Abbie receives her therapy. He was kind enough to meet with Abbie's entire team, who all attended the presentation the day before, to delve more deeply into certain topics, and to assess Abbie. We were even joined by her orthopedic surgeon for an hour...a stunning amount of generosity, given his very crammed schedule.
We took video of the assessement, but I have not seen it yet - so, this will be from memory. It won't be hard though, because the highlights (or lowlights) were searing to receive.
I. The Value of Stillness
Traditionally, we always look for the culprits to "retrain"..those loud, noisy, bullying muscles. If an electro-myelograph is done, the large muscles literally scream for attention so insistently that it's hard to focus on anything speaking more softly, and impossible to consider those not speaking at all.
Leonid came up with an apt analogy for this: a foreigner, previously unexposed to the USA hears only the 50 or so congresspersons who hog the media, and adds to that the input of our outspoken stars and starlets, and comes away thinking he understands the whole of what America is about. That is what we do when we figure out the body by paying attention to those parts that wail for our attention. Both views are utterly incomplete, inaccurate, and lead us to all sorts of false conclusions.
The connective tissue, on EMG, is silent, going about its tasks in the unassuming way that results in invisibility. Not only do we listen for the shouts and ignore the silent tissues, but we look for the movements. If a part of the body is not designed to move, we pay it no heed, never thinking that the stillness may be critical to overall function, and its loss a key barrier to health.
As you sit reading this, place one hand gently on your trachea (windpipe) - then, turn your head to the right and left a few times. How far out of midline did your trachea move? Not at all, right? THAT is stillness, so taken for granted that we don't even notice or appreciate it.
The support structures of Abbie's neck have collapsed so completely that her trachea moves all over the place. When her head is turned to the left, it is deviated to the right, and vice versa. The weakness in her neck is apparent once you know that bulging is an obvious sign. Because her trachea is not anchored by the connective tissue and ligaments, she prefers a head position that makes it easiest to breathe.
Think about gasping for air after a sprint. What do we naturally do during the initial recovery? We throw our heads back and gulp in the air. This is part of the reason she prefers what we call a "nose in the air" position (the other part will be explained later). So, when well-meaning people reposition her head to look straight forward at midline, she feels her airway being somewhat restricted and turns her head to the side to relieve it. I've always been told it's a neurological thing - this preference for head-turning. Yea...not so sure that's the whole picture now.
Abbie has lost the stillness not only in her neck, but at the upper parts of her thoracic cavity (chest). She is not using the upper lobes of her chest much at all, which has turned them into a "sewer". We cannot even start doing ABR on her upper chest until we get other areas strengthened in order to drain the swamp, otherwise she will be overwhelmed.
Understanding the ramifications of stillness, and its loss, made me appreciate connective tissue even more.
II. The Answer to the Secretion Challenge
Everywhere Abbie goes, her suction machine goes. Airport security absolutely stresses me out, because they insist on separating the girl from her mechanical pal -- and even 10 minutes can be too long sometimes.
It wasn't always this way. After she was decannulated, we didn't even turn it on once for 3 months, until she got a cold. Since then, our constant companion has seen progressively more use. I have wracked my brain to figure out what I am feeding her that may cause secretions. What is in the air she may be reacting to? Reflux meds made no difference. This has been one mystery that has almost driven me mad.
And then, here comes the simple answer from left field. Everyone's lungs make copious amounts (30 liters or so) of secretions each day to keep the lungs lubricated. We have the pneumatic and hydraulic pressures and capacities to pump these properly through the system. They are partially dispersed by seeping through (under pressure) from the thoracic to the abdominal cavity.
Well, Miss Abbie's pumps are no longer working, resulting in the pooling. The collapse of her tissue has made it very dense so seepage is not possible (and there isn't adequate pressure to push it right now anyway). Hence, the only way she can clear her lungs is to excrete it through her mouth and nose...often. How thankful I am, then, that she has a strong cough -- which she showed off to Mark and Leonid, resulting in a "cough zone" reminiscent of a Gallagher show.
So, much of her secretion challenge is mechanical....partially related to reflux caused by weakness (I think), and partially related to the "extreme weakness" of her respiratory system.
Those words in quotes were hard for me to hear, as I have felt it coming, but didn't know how far she had sunk.
Leonid had us get on one side of Abbie as she was lying on her back, and then reach to the far side of her chest with both our hands. We compressed her chest with both hands, and it folded like fragile butterfly wings. My throat clamped shut and tears came.
Her ribs are no longer oriented parallel to the ground, but are more vertical, so that as force comes up from the ground as she is sitting, she doesn't have the mechanical structure to handle and distribute the force properly. It's like injury on top of insult on top of impossibility...
Later that evening I overheard Leonid tell someone that Abbie's respiratory system is "hanging on by a thread." Ugh.
III. Fake Versus Real
Leonid sat Abbie at the edge of the massage table and held her at the bottom of her ribs. She was sitting pretty well, and we were happy with that....for just a second. Then he pronounced, "This is fake."
She was not using strength to hold herself up, but rather was relying on a restriction in her lumbar spine that prevents her from falling forward. Great...so all this progress we had been seeing in this area was only her tapping more deeply into the inflexibility of her spine. Useful, smart...damaging.
It's a great way to keep her from face-planting when seated, but as the restriction deepens through use it pulls down on the back of her skull -- the other factor in her "nose-up" preference. As the downward pull has been tilting her head back, her jaw assumed a more open position. So much so, in fact, that location of her of molars drifted so that currently, even if she wants to close her mouth, she can't because her back teeth meet before her mouth closes.
The more we practice sitting with her, the more we enhance the fake and prevent real strength. What a conundrum. He made sure we realized that as we progress through the ABR process, there will come a time when that restriction releases, but strength has not been built up yet. In other words, there will be days of face-planting. Never thought I would look forward to that, but I do now.
The whole "fake versus real" issue looms large when we think about little ones who may have been born with challenges. A mother's intuition may be prodding her, telling her something is not right. But, if her baby "meets milestones" in reasonable amounts of time, she is told her child will be OK.
But, what if a child is holding his head up via a restriction or spasticity (fake) instead of strength (real). What if instead of rolling (real) he is flipping (fake)? These differences take trained attention and the right paradigm to notice, but ignoring them allows a child's challenges to slip by under the radar until perhaps years of opportunity have drifted by.
I acutely felt the loss of those years when, later that evening, Leonid saw a large photo of Abbie on our piano. "How long ago was that taken?" He asked.
Hmmmm..I had to think for a moment....three years.
"Wow -- look how much better she looked back then," he said.
Ouch. The truth stung hard.
Pulled down by the head tilt and let go by the tissue collapse, her face has seemingly slid down her skull...her cheeks are smaller and her jowls are bigger. It is harder for her to smile. I did see all this happening, bit by bit, and I felt helpless to stop it.
It's strange to be sad as I look pictures of her as a four-year-old. It used to be that only pre-drowning photos could stab my heart. But, now I see how far she has gone in the wrong direction from those early years. Oh, I wish I had known what I know now.....but I remain thankful that I have learned in time to help her.
There is even more we learned, but I will save that for another post, as I have to go, and I'm sure you do, too.
Just one little "Abbie-ism" I have to share first. The day of evaluation was all about "weakness, extreme weakness, and profound weakness" all over Abbie's body. At bedtime that night I could tell she was distressed, and took a chance that I knew what it was.
"Abbie -- I know that today everyone kept saying over and over how weak you are. But, you know what? You are strong where it counts! Everything else can be fixed, but you are strong in your heart, and in your spirit and that is what matters."
A smile came, and sleep followed soon after.
She always has been, and remains....strong where it counts.