Wednesday, July 15, 2015

all about Eleni

My heart is so full.  Eleni and I have just finished a Skype appointment with a highly esteemed functional eye doctor in Belgium.  I can hardly believe the places this journey is taking us.  So much going on!  Let's begin at the beginning... or at least where I left off.

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

So, Eleni.

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!
 


94 comments:

  1. Very interesting, on so many levels. Thank you for sharing.

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  2. Wow. I am so thrilled for the bits of progress Eleni is experiencing!

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  3. This post makes for fascinating and hopeful reading, I'm so glad that Eleni is progressing slowly but surely towards that light at the end of the tunnel.

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  4. Thank you for sharing. I cheering for every bit of progress Eleni is making.

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  5. This was so fascinating, Rachel and I am sure it gave you such hope and a sense of her really being known and understood by those amazing women. I love love how God is moving in and for you and her.

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  6. oh my goodness, I had to read this three times through - so much news, and so much progress... you are a fabulous mom to this special baby. Sounds like you have found a really helpful therapy.

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  7. I love medical "stuff" and this is wonderful to read. Thank you for sharing. You are doing such a service to others with children with this condition, as well as helping grandmothers, friends and aunts understand more as well. (I bet a few grandfathers and uncles as well!) This is truly a great service you are doing.

    I send you my best wishes and my thanks for sharing the story of your daughter and your family. Many blessings to all of you. Sue.

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  8. Yay Eleni! So wonderful to read about her progress! Thank you for sharing her (and your) journey. The human body never ceases to amaze me.

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  9. Such awesome progress and work! Thank you for taking the time to share your journey. One thing that seemed to jump out of the photos was how changed Eleni's body seemed, when she was with Marcy. She appears so much more....comfortable? So wonderful.

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  10. Rachel, I'm so happy to hear Eleni is making progress. Way to go mom!!! You're amazing!

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  11. I love hearing about Eleni, especially when it comes to good news. Thank goodness you are being proactive and investigating every possibility for your sweet baby. I hope the rest of your family is also faring well!

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  12. Rachel, that was absolutely fascinating. I pray for you and Eleni everyday. It is so fantastic that you are making progress and getting answers to your challenges.

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  13. Love love love getting these updates. I'm rooting for that little girl. She is fierce. She's got her mommy's determination.

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  14. This is all such positive news! Thanks for the updates...I love hearing what you are doing and how it is helping Eleni...she is very blessed because she has a loving family who are seeking out ways to help her learn and grow. I am excited to see the next update!!

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  15. Wonderful. So glad to hear that things are progressing.

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  16. Yah Eleni! Such good news, I'm so glad she is showing a bit of improvement. Continued good thoughts and prayers.

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  17. This is wonderful news, Rachel! Inch by inch . . . progress! Praise the Lord for caring professionals!

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  18. This is all so exciting and wonderful (and fascinating - learning about these therapies and brain intricacies as you share them with us through Eleni's treatment), Rachel! Thank you for educating us, and for letting us be part of the conspiracy ; )

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  19. thank you much for sharing your journey with Eleni. I'm an early childhood special ed teacher and I'm so appreciative to hear this story and all of the different approaches you are using.

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  20. I am so glad to hear about Eleni's progress. It's wonderful you are seeking alternative treatments. Maybe her easier breathing will make swallowing a more realistic reality now!

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  21. Thank you for updating us on Eleni's progress. I rejoice with you. This is so interesting as I've never heard of this therapy and it's great that you found it and that it's working so well for your little girl. Keep us posted. I like to read about your sewing adventures but find your mothering adventure interesting as well.

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  22. I really look forward to your articles on Eleni and her progress! It sounds like she is coming right along! The work you are doing with her is very interesting to read about! It also sounds like your trip to Chicago was great. I'm so excited to hear that Eleni is trying to roll! That's huge! Keep up all the good, hard work and keep your energy and spirit up too! You are a inspiration on many different levels for me!
    As always, my thoughts and prayers are with you and your family - Camille

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  23. I am so happy to hear all of this!! We adopted our daughter at age 11. She could walk but not upright nor could she jump, hop on one leg, catch, run, etc etc. we worked with her "where she was" and found a Gonstead chiropractor that helped open up her brain stem then it was like a rush. But still with 11 years lost she could only do things and still does at age 20 in one direction. But she runs, jumps, catches, etc. we even taught her how to dirtbike (in one direction). She has a job and a steady boyfriend now. Cerebral palsy is workable. You are creative. You'll figure this out :)

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  24. Thanks for sharing the wonderful bits and pieces of good news and progress for Eleni and about how you cope with it yourself. I never heard of ABM before, it is good that we learn so much about therapies and brain conditions we are unaware of through your posts! Keeping my fingers crossed for your sweet little Kona girl!

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  25. I'm so happy to hear about Eleni's progress...! You are so positive that I'm sure this will be very good for her. I will be praying for you all. You are a wonderful mum!!!
    Thanks for sharing

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  26. Such wonderful & encouraging news. I rejoice with you & pray that Eleni continues to progress every day! I pray God's richest blessings to you & your family :)

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  27. I'm happy to hear that Eleni is improving and that therapy is helping her! Hope this continues and one day she'll smile at you:-)

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  28. I'm so glad that Eleni is showing great progress. Keep strong.

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  29. Oh Rachel! I didn't realise while reading this how absorbed I was. But it's a warm day and as I finished, I needed a huge breath and broke out in goosebumps. It is so GOOD to hear of such progress. It is so good to hear you speaking of Eleni with such fondness and optimism. It is so good that there are such kind and experienced people in the world and you have worked so hard to find them. You are just the right mother for this baby, I am sure of it. xxx

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  30. It is clear to this grandmother that your persistent and incredible awakeness around Eleni will be what gives her the fullest life possible. And it is fuelled by your radiant love. How good you all found each other on this space and time continuum.

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  31. Rachel, this is amazing. The infant brain has so much plasticity and you are doing everything within your power to give your daughter the best for a wonderful life. It is an incredible challenge, but the most rewarding ever. Having been through something similar with a granddaughter born with a very large brain tumor near her brainstem and fighting huge battles to get the four surgeries and therapies needed, she is doing well at age 8. Bravo to you and your support team--always believe that everything is possible. Eleni is teaching the best of life's lessons--it's a wonderful journey.

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  32. Thank you for sharing! It warms my heart to see so many care givers caring and loving on a baby.

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  33. So happy to hear of her progress! My prayers for all of you continue. It warms my heart so to see a special needs child winning the battle.Remember, if you ever need Indianapolis I am happy to host you! Linda

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  34. Oh Rachel, my heart bursts for you and your family and all that you go through with your beautiful Eleni. How blessed Eleni is to have you for a mother-patient, loving and always looking for ways to help Eleni. You are one special woman! I am glad you have found so many people/doctors to support you and Eleni.

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  35. I'm so happy to read you and Eleni are both making progress together :)

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  36. Rachel this is such inspiring new to hear! By sharing your journey you are educating countless others who over time will then pass this information along to others. What a blessing you are. Every day, if we take the time to look, we see evidence of God at work. This journey your family is on is such a testimony. Sweet Eleni is in the best of hands :) Praying for continued progress.

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  37. What wonderful, hopeful progress!! She's in our prayers

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  38. So amazing to read this news and begin to understand that there is so much available to help and strengthen such a tiny little girl. The therapy to help her learn to relax and breathe and move is just fascinating. Wishing you all the best and continued progress on this remarkable journey.

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  39. Today I am passing Eleni's story on to my daughter's neighbor who has a 2 year old without any life skills left after a brain tumor. Medical science has "done all it can" and she is without hope. I believe your story and Eleni's story will give them hope and a place to start.

    I admire and support and applaud all you and your family are doing and thank you even more for letting us share the difficult journey. It's tempting to remain private when dealing with hard, personal stuff, but the blessing only expands as you share. I appreciate your trust in us, your reading friends.

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  40. Oh my goodness. Thank you so much for sharing all you've been through and continue to learn. What great human beings are out there to help these special children! I pray for your continued hope and success with Eleni!

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  41. Good for Eleni and good for you! May every effort you make be rewarded with progress always. She is simply beautiful.

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  42. Thank you for the update on Eleni, and what an encouraging update it was. You are doing such a great job of being Eleni's mom, her voice, her advocate! I continue to pray for Eleni and for your family!

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  43. Determined....I like the sound of that! Thank you for sharing her progress with us.


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  44. Thank you for your wonderful update on baby Eleni! Sounds like so many different doors are opening for you and your family. The thoughtful and comprehensive techniques you are employing are wonderful building blocks to future growth. Prayers to all!
    Fondly, Pamela

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  45. So glad to hear of Eleni's progress. Your determination, resilience, strength and persistence will enable you to push past any adversities Eleni might present. You are quite the role model and advocate. Never loose hope.

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  46. I have been a follower of yours for sometime, I'm sending your my most heartfelt wishes for you, as the wonderful momma you are, that your precious Eleni will continue to be blessed by the talents of others to make the very most of potential.....Praying for your patience, learning, flexibility and grace!

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  47. My heart is so full sis, this is such wonderful news. For the power of prayers and all those around the world- our family says Thank you too all. So so happy for Eleni♡

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  48. I'm so glad that you are able to share more good news about Eleni, and that you have found such a fantastic network of caregivers for her!

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  49. I'm so glad that you are able to share more good news about Eleni, and that you have found such a fantastic network of caregivers for her!

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  50. Thank you for the news. God bless you in this journey, give you strength, wisdom, support! You have not mention anything about Eleni's hearing, is it all right?

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    1. Yes, she has the ability to hear according to hearing tests. However, I do not think she is often using her hearing, just as she is not often using her sight. Her brain cannot make sense of it yet on a regular basis.

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    2. Quite right. She can hear and see but not make sense.

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  51. Such wonderful news, Rachel! Definitely party-worthy progress! :-)

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  52. So glad to hear all this good news!

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  53. Good update. So glad you are investigating this for you sweet girl, and praising God for all the amazing people He's bringing you to.

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  54. Thanks for sharing, thrilled for the progress!

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  55. Thanks for sharing Eleni's progress it's inspiring and heartwarming. You are an awesome lady which clearly the people helping you realise.

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  56. This is absolutely amazing! We've all heard about how much brain development occurs in the first two years... It doesn't seem like such a leap to imagine how much progress and healing can occur through therapy during this crucial time. I know many others have expressed this already, but Eleni is so blessed to have you as her parents - all of your (and her!) hard work surely will pay off!

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  57. I am so happy to hear your very positive news, sending you all lots of love, especially dear Eleni.

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  58. What a wonderful post full of good news! So glad to hear about all of Eleni's progress. It really is amazing what can be done to help her. I really enjoy learning about these new and fascinating therapies. Thanks for sharing!

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  59. Thanks for sharing this news on Eleni's progress. It's so interesting to learn about these techniques. With much love.

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  60. Thanks for sharing this news on Eleni's progress. It's so interesting to learn about these techniques. With much love.

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  61. Go Eleni! Go Momma! Go great cloud of witnesses! Thank you for sharing Rachel.

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  62. Thank you for the update. I think about sweet Eleni, you and your family all the time. I'm so grateful to hear about her progress. We're all cheering her on and keeping you in our thoughts and prayers!

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  63. You go Mom...keep on keeping on...Lucky Eleni with a mom like you!

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  64. Many blessings to you and Eleni! I loved reading your update on all your appts! It's very interesting. I pray that she continues to progress!

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  65. Wow! Imagine a generation ago...poor Eleni would just be stuck because all this knowledge is so new. I am so proud of YOU for your diligent study and searching to find the best treatments for your precious baby. You didn't give up and it is paying off, along with lots of prayers and the blessings that follow.

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  66. Awww, yay! So happy for the great report. Will continue praying and blessings to you all. :)

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  67. Oh my goodness! So many wonders! We are ALL learning so much through Eleni's life! Thank you again, so much for your willingness to share! Hugs to you and your family!

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  68. So thankful to hear of Eleni's progress. How blessed she is to have you for her mom! Thank you for the update.

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  69. What a happy update. Thank you for sharing Eleni's progress. Keep up the good work - both of you. Can't wait to see what she's doing next. What a wonderful mum you are. Hugs.

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  70. Boy, I really enjoyed reading this.
    after you told me about this ABM I looked it up.
    I read the whole thing. Incredible! I pray for all of you daily. I have put prayer cards in all of our local churches and ours too of course.
    I have learned that any kind of brain injury needs very slow and gentle consideration. I am thrilled that this is working for Eleni. Now I want to tell you that I started working in the same manner with my 92 year old mom. She had a stroke two years ago.
    For a 92 year old, recovery is one thing but just holding back the forces of dementia because of the stroke is the main objective.
    I am surprised that none of mom's physical therapists over the past two years have thought about slow and gentle on brain injured patients.
    I am so glad glad glad that Eleni is responding.
    All of you are on my mind daily, as I spend time with my parents daily. Every minute is valuable.
    As an olden RN with an expired license, I now imagine how incredible it would be to specialise in a field working with patients with Anat Baniel. Every one that needs this, deserves it.

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  71. You have so many of us out here praying for healing of Eleni's brain and body and so much progress is awesome! You are in my thoughts daily. I love that she is being taught how to move and feel that there is no limit to what she will learn with your help and with the specialists you have located. Thanks for posting about her journey and I look forward to your updates about her. Also love your quilting blogs!

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  72. You have so many of us out here praying for healing of Eleni's brain and body and so much progress is awesome! You are in my thoughts daily. I love that she is being taught how to move and feel that there is no limit to what she will learn with your help and with the specialists you have located. Thanks for posting about her journey and I look forward to your updates about her. Also love your quilting blogs!

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  73. You have so many of us out here praying for healing of Eleni's brain and body and so much progress is awesome! You are in my thoughts daily. I love that she is being taught how to move and feel that there is no limit to what she will learn with your help and with the specialists you have located. Thanks for posting about her journey and I look forward to your updates about her. Also love your quilting blogs!

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  74. This beautiful update brought tears to my eyes. God bless you, your family, and your sweet Eleni.

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  75. So thrilled to hear about her progress and all the generous outpouring of love. It's how life should be.

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  76. Such wonderful news. So happy to hear about her progress, I truly enjoy these updates even while they weigh heavy on my heart (and I am only a bystander). Loads of strength and comfort to your whole family!

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  77. Amazing. Each small gain Eleni makes will truly add up to a better life for her. Sometimes it really does take a village to raise a child... what a great mom you are to share your story. Hugs!

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  78. Sounds like you're taking all the right steps! How amazing are the folks who know what Eleni needs. You should feel rightly proud of all accomplishments no matter how small xx

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  79. Rachel, this is just incredible. I'm thrilled to hear of the progress Eleni is making and so proud of you and your relentless efforts to insure her life is all it can be. I've said it before, but she is SO lucky to have you.

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  80. This is such wonderful news and such a blessing! Please keep us posted!

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  81. Thank you for the update. It's so fascinating to read. I'm praying for Eleni and it's awesome to read about her progress.

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  82. I live in Chapel Hill, NC. If you ever need to come to this area for sessions, you are welcome to stay with us. This is a medically oriented area with UNC and Duke nearby, so maybe there are ABM therapists here too.

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  83. So great to hear the therapy is helping and she is making progress. And so good for you (and your family) to understand more of her and why she reacts in the way she does and that you can practice with her. Thanks for sharing, very interesting and encouraging.
    Groetjes
    Annemieke

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  84. Wow! This seriously has me tearing up. I'm so overwhelmingly thrilled for you and your girl that you are finding help for her...and that you have gained hope. Continued blessings!

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  85. so much positive news! we are thrilled for you and pray that Eleni continues to progress

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  86. This progress sounds amazing- YOU are amazing. I think of you and your family often. I appreciate the updates and that you continue to be real and honest in this space.

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  87. I love you Mom, thanks for sharing the news it is sooooooooooooooooooooo amazing how ABM works.

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  88. You are an incredible family. Thank you for sharing this story with us. God bless Eleni and all of your family members.

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  89. Both heart wrenching and heartwarming, all at the same time. Rachel, you are an amazing Mom and have met some amazing people in your quest to give Eleni the best life possible. I would be having a party for each milestone too. Blessings to you and your little girl!

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