about her Therapy
In Eleni's 3 month update, I shared some background information about how Eleni's brain damage effects her ability to learn to move. She has cerebral palsy, which means her brain struggles to communicate with her muscles. Since late May we've been bringing her to ABM (Anat Baniel Method) lessons. At these lessons, the practitioner gently moves Eleni's bones in ways that invite her participation. They also guide her through a huge variety of tiny motions intended to replicate the kind of random movements that baby's typically enjoy and from which intentional movement can develop. Basically this method helps the brain to map more of the body, creating potential for movement.
When we learn something, be it quilting or moving, our learning must start right were we're at. We attempt things just at the boundaries of our comfort zone. If you're trying to free motion quilt for the first time, it's not nearly as useful to tackle a highly complicated free motion quilting pattern as it is to just make loops. Making mistakes and trying different things along the way gives the brain an opportunity to really grow and understand. During a lesson, an ABM practitioner will touch and feel where movement is available in the body and encourage that movement whatever it is. It's not really about learning one specific way of rolling over (or one free motion quilting pattern); it's about learning how to move so that one's possibilities expand infinitely.
As Anat Baniel shared in her article "A new approach to helping children with Cerebral Palsy and other brain related disorders." published in Cerebral Palsy Magazine, June 2003:
The gentleness with which the guiding movements are done and the insistence on having the child move in ways that feel easy and are not beyond the child’s true ability, creates a sense of safety for the child. This allows the child to feel him/herself and become aware of what he/she is doing and what is being done to them. As a result they become active, intelligent and happy learners just the way healthy children are. In fact, healthy children move –albeit spontaneously- in a great variety of ways that are easy and available to them. Portions from these movements get integrated by the brain into a useful action – for example crawling. Once a child accomplishes a milestone, it continues to generate a great variety of small and large movements from which the next milestone will be carved.For more info on how ABM works, visit AnatBanielMethod.com or Normon Doidge's book "The Brain's Way of Healing."
about her Progress in June
One of the first things we noticed when tentatively approaching our baby girl that first day in the NICU was her breathing. She sucked in air in great gasping, desperate motions, her chest heaving and her stomach contracting with tremendous effort. The respiratory therapists ensured us that she didn't need to try nearly that hard to breathe. With oxygen assistance her body was oxygenating just fine. It took us awhile to realize that wasn't the good news it seemed. Clearly our baby's traumatized brain was battling something with each breath. It turned out she was battling herself, but that's the end of the story.
Fast forward three months. In June Eleni faced her second hospitalization for respiratory distress due to a cold. This time we were discharged with a collection of medications to be used "as needed". Holy cow! As needed? My first instinct was not to use them. I hate to medicate my child with side effects like dry mouth, blurry vision and racing pulse. But when her breathing became increasingly labored as days past, I realized that she needed the medications. I used them.
We went to our third series of ABM lesson about a week after her hospital discharge. The practitioner agreed - on medication Eleni was breathing with more ease than ever. Things weren't quite right, but her breathing was easy enough that Lara was finally able to work on Eleni's arms and legs, hands and feet. Previously her work had been focused on Eleni's breathing, because when one is struggling to breathe, it's hard to learn much else.
We saw some improvements in Eleni from ABM lessons in June, but her week-long hospital stay definitely created a regression. She started having scary muscle fits (not seizures, but similar), completely stopped using her eyes and her body was rigid most all the time. Fortunately, after her complete recovery and that late June ABM intensive Eleni began gaining ground again. Baby's legs became looser, she moved her legs and feet significantly more, made daily eye contact and used midline at least half of the time! Even though these improvements felt small, I was glad that she was able to recover what she had learned before the trauma of her week-long hospital stay. I think that bodes well for her.
about her Progress in Chicago
Just last night I returned from a week-long trip to Chicago where Eleni had ABM lessons with a wonderfully experienced and skillful practitioner, Marcy Lindheimer. This was Eleni's longest series of lessons and also the most eventful.
First, breathing. Marcy is a breathing expert with special training aside from ABM. She observed that Eleni was using her diaphragm in opposition to her breath. So, she would bring her diaphragm upwards while drawing in a breath. Then, she would push her diaphragm down while exhaling, which created "retraction" around her chest. This dysfunctional movement worked against her and resulted in a lot of visible effort. By her second lesson with Marcy, Eleni was sometimes breathing properly. On day two she was often breathing properly. Now she is regularly using her diaphragm correctly, except when making noise. Marcy says she is on the right track now and should improve as she continues practicing her voice.
The difference is visible. In fact, I am already backing off on some of her meds (remember, "as needed") because she's breathing with such ease. Marcy says her breathing is "perfect" at rest. What a relief to us all, especially Eleni!
Now, she does still have apnea, which is unrelated to her diaphragm usage, but at least her every breath is no longer a battle. Her apnea has improved since we've began working with a homeopath.
Second, arms and hands. Eleni has one wrist that usually cannot be straightened and one hand she keeps fisted closed. When she's in a deep sleep and as relaxed as possible, I try to bring them through normal range of motion to prevent long term problems. Marcy worked the most with Eleni's arms and hands. Towards the end of our time in Chicago, we noticed we could open her hand so much easier. On the day we traveled home we saw her bringing her wrist practically straight. So, not only can we straighten her wrist, she can. That's huge! She's been doing it today too.
Third, rolling. Yes, rolling! Now Eleni is not rolling by herself. Gosh, if she was doing that I would be throwing a party (literally). With cerebral palsy, rolling by one year of age is considered a good indicator for independent mobility someday. So, she is not rolling all the way over by herself. But, she is definitely trying. A lot! Marcy helped Eleni learn how to get on her side intentionally and how to be comfortable rolling to her stomach. She still needs help to do it, but she initiates it all the time and seems to know what is coming. Sometimes she will move her hips herself, other times her arm or her legs. Once on her stomach she will even try to lift her head.
This is the first time she is consistently comfortable being flat on her stomach for tummy time (not reclined on my chest) and consistently engaging her head in that position. I'm convinced it's because she has initiated, understood and is participating in this movement. It's entirely different than going to traditional physical therapy where they jump right to tummy time on the floor without respecting the emotional state of the child as regards to getting to and being in that position.
I'm really thrilled with our trip to Chicago. It was soooooo worth it. But not just because of Marcy...
about her Vision
After making plans to go to Chicago I remembered that I'd heard of a optometrist in Chicago who specializes in vision recovery after brain injury. Dr. Zelinksy made time to see Eleni during our stay. At first, our sleeping beauty refused to be roused for her testing, but after a half hour snooze she woke up and "looked" around.
Only she didn't. Because she doesn't.
I knew there was something seriously wrong with her vision. Dr. Zelinksy confirmed that Eleni did not show any conscious or even subconscious vision at the appointment. The doctor feels that Eleni's nervous system is incredibly fragile. Because she cannot make sense of her environment, she retreats from it. This could explain why she sleeps more than a typical baby.
The doctor has a huge wall of diagnostic tools. With a playful spirit she tested Eleni with apparatus after apparatus looking for a reaction. Fortunately we did see some reactions, which all supported a single conclusion. Eleni can see in a limited range like a "vision tunnel" on her left side. She is not actively using this sight, but it's there and can be demonstrated to effect her body. Her awareness is at the subcortical or "bodily" level, not a mental level. This explains why she responds to ABM therapy (very body-oriented), yet does not react to toys or sounds or people very often.
Without getting too technical the good news is that there are some simple things we can do at home to try to "wake up" her brain. We must be gentle, so as not to overstimulate her. She can only engage in short, safe bits. I'm so glad there is something we can do and that I sought it out. Because her vision problems are brain-based, not eye-based, we can hope that her vision can be significantly restored with proper stimulation and time!
Remember that Skype appointment? Eleni was "seen" by an expert functional optometrist in Belgium today who showed me how to use light and color (Kona cotton, baby!) to stimulate healing in Eleni's brain. I know that sounds crazy, but just look up "syntonic light therapy." Dr. Zelinsky put us in touch, and he his helping Eleni out of his generous heart. Can you imagine? The world is truly conspiring to bless this child.
And you all are part of that conspiracy! Thank you for your support of our YouCaring fundraiser. We are more than halfway to our goal! Those funds are being set aside for continued ABM lessons, maybe even another trip this year to see Marcy in Chicago. She expressed her wish to work around and in Eleni's mouth, given the opportunity. That would be great since baby is still eating exclusively via g-tube and aspirating her saliva due to her poor swallow.
We'd really love to see growth in that area (suck and swallow) and in her head control in the coming months. But the truth is we don't get to pick and choose. Ultimately we are grateful for any and all progress that is made. She has a long, long ways to go.
Today she is determined to roll. And that is something I love to see her trying!