Friday, May 29, 2015

Eleni, 3 months

Eleni, 3 months

Eleni, 3 months

It seems miss Eleni was rather uninspired by the prospect of a photo shoot this morning.  She fell right asleep, so I rolled her over and decided we could work with that.  Today's photographs are captured on a Vignette fabric by Laura Gunn for Michael Miller.  I love that saturated green!

For those just joining us, our baby suffered from oxygen deprivation prior to birth, with an MRI showing severe global brain damage.  She is disabled as she is unable to take food by mouth and has early signs of cerebral palsy.  Because of her birth trauma, her brain sends too many activating messages to her muscles, resulting in excess muscle flexing and tightness that discourage normal movements.  Her brain damage also manifests in difficulty breathing and using her eyes.  So many things rely on muscle control!

Sleep is not an unusual state for our sweet baby.  She's hardly ever awake and can even sleep through her feedings, since she's tube fed.  I'd love to see her more alert and interactive!  But at least Eleni is gaining well, weighing about 10.5 lbs at 3 months, up from her birth weight of 5 lbs, 11 oz.  We are pleased that her head growth is normal, which means her brain is at least growing.  Growth is good.  Here she is slumbering away during her bath this morning!




Ok, so today I want to tell you about something new we are pursuing for our baby, but first a little background about cerebral palsy (CP).  If you do even a little research about cerebral palsy, you will read again and again that it is not treatable.  It is also not "progressive" in the sense that the damage to the brain happens at one time and does not continue to get worse and worse.  However, the effects of the damage do get worse and worse, often causing deformities that physical therapy (especially stretching) may prevent.  There are 5 levels of CP, ranging from so slightly effected that it's mostly undetectable to severely effected with all four limbs unusable and difficulties with basically every bodily function.  It can be really, really bad.  The crazy-causing part is that no one can tell you how your child will be effected.  It's all wait and see.  Some babies with severe brain damage wind up doing very well and vice versa.

I'd like to take issue with the "not treatable" aspect of this tale.

In the last 15 or so years, neuroplasticity (the ability of the brain to change it's own structure and functioning, i.e. to reorganize or "heal" itself) has become a proven scientific phenomenon.  However, it seems that when dealing with CP the medical establishment has missed the memo.  Perhaps, because neuroplasticity is so new, treatments to induce brain reorganization and healing have not yet been proven.  As a result, healing therapies are never mentioned by neurologists (gah!) and certainly not covered by insurance.

Obviously, that won't stop parents.  A bit of searching the net yields a bunch of alternative therapies for CP.  While Eleni was still in NICU, a research-oriented friend gave me a copy of a book describing what is probably the most popular and/or promising treatment: Anat Baniel Method (ABM).  So, the short version is..

We're doing it!  And, it may be working.

ABM is a physical, movement therapy that aims to treat the brain.  The brain learns to move in infancy through a wide variety of random movements.  For a CP child with tight muscles, these movements don't happen and hence the child will struggle to learn to roll over, crawl, sit, etc.  Practitioners of the Anat Baniel Method touch and move the child in ways designed to provide the information the child's brain needs to learn how to move.  Results can be quite dramatic or more slow and minor.  But this is key - from what I can tell, most children do make progress learning how to MOVE parts of their body they could not previously move.  

Eleni, 3 months

Obviously I am afraid to be too optimistic, but I'm also darn sure going to try.  Eleni received her first session (6 clustered lessons) about a week ago.  Since her lesson she's done many new things, some just once or twice and some over and over again.  The most important change is that she is now able to hold her head in midline at times.  By that I mean she does not always turn her head completely to one side (maybe passing through midline, but never staying there).  She has found her "center" which is foundational to so much future learning and growth.  She does not always choose midline, but it is approaching 50% of the time.  That's HUGE!

Some other little improvements we noticed during and after the session are:  rolling from back to each side, sucking with cheek involvement, large left leg kicking, vocalizing a new sound and bringing her hands together low over her belly when lying on her back.

Honestly, I was very guarded, during and after the ABM sessions, against allowing myself to believe that change had occurred.  My mother, who traveled with me for this out-of-town therapy, was trying to tell me that Eleni was definitely turning her head and eyes to voices, especially mine.  I'll never forget what happened when we arrived home from our travels.  My mom and I were on opposite sides of Eleni, who was strapped in her carseat.  I spoke to Eleni and she turned her head from midline to look at me, with her eyes.  I stopped talking and my mother began calling to her.  Eleni turned all the way to my mom.  When mom stopped and I spoke to Eleni again, she turned right back to me.  Such a little thing, but so much!  So very, very much!

Since our session last week, Eleni has been using her eyes better, focusing on people and sometimes on toys several times each day.  Still, when she doesn't do her "new" things I so easily feel despair.  Did I imagine that?  Is this authentic progress?  Did she already forget how?  I know that change doesn't have to be constant to be real, but it's so hard to feel that truth when your child turns away, unresponsive again and again.

Of course, the only way to know if it was ABM that brought these changes would be to go back in time and not do the ABM treatments.  Just as with anything we do to help her, it's impossible to know with certainty what exactly is working.  But my instinct is that the changes we've seen are so clustered and so developmentally significant (here I mean the head at midline) that we must continue on.  We will do two more sessions (6 lessons each) in June and then evaluate this alternative treatment.

I hope beyond hope that by that time there is no question in our minds that our child's brain is reorganizing itself in a helpful, healing way!

Thanks again for taking this journey with me.

xo,

Rachel


129 comments:

  1. Good for you for taking research and treatment into your own hands. But also for passing along the information for others to use! What a great time in technology we live in that this is possible.

    ReplyDelete
  2. She is adorable and so lucky to have parents that are willing to fight for her. My mom teaches kids with special needs and I was telling her about Eleni while she was visiting recently. She has several students with CP and she said that you can always tell which parents are fighting for the kids because it makes such a big difference.

    ReplyDelete
  3. I know you're afraid to be too hopeful, so I'll be full of hope for you. This sounds like great progress!

    ReplyDelete
  4. As a physical therapist, I applaud your path right now. It makes TOTAL sense how this therapy would work...and yes, infants have a lot of plasticity. I work with mostly adults with developmental delays and I get very frustrated with the medical community who does not believe treatment can be effective. I have seen improvements in adults, so I believe young children have an even better chance to respond to targeted therapies. The changes you have seen are SO significant...midline and head control are necessary for other skills to develop...so keep going! Eleni is so lucky to have parents willing and eager to try whatever is out there. Keeping you all in my thoughts and prayers.

    ReplyDelete
  5. I'm so happy for you to have had some positive outcome with this therapy! I wish you more success with it. Eleni is absolutely beautiful and I'm sure you were just overjoyed to have your baby girl look you in the eye!

    ReplyDelete
  6. I so, so hope for you that the therapy is working and helping Eleni! Keep fighting for and with her and I'm sure she'll be a lot better than when you're not fighting.

    ReplyDelete
  7. You are so THE right Mom for this sweet girl. I believe everything you do now will be worthwhile, I really hope you get that smile you deserve soon xxxxx

    ReplyDelete
  8. How fortunate Eleni may be with you as her mother .....

    ReplyDelete
  9. Remember, no prognosis is written in stone...especially when it involves an infant. Doctors can have opinions, but opinions are not fact. Keep up the good work with your precious little bundle. I pray she spends the rest of her life proving them wrong.

    ReplyDelete
  10. I am so excited that you are seeing progress. I pray every day that her brain will heal. This therapy sounds awesome!! Keeping you in my thoughts.

    ReplyDelete
  11. This is so very hard, but you are doing all the right things, mama. I love hearing about Eleni turning to your voice! That is so real!!!! Based on what I know of CP, she may not be able to express her love with her body, but it doesn't mean she doesn't feel her mother's love and hear her voice and respond to those inwardly. I hope you will continue to see those outward expressions but remember the love is there even when you can't see it. You are her world right now! So many hugs.

    ReplyDelete
  12. I am so excited that you are seeing progress. I pray every day that her brain will heal. This therapy sounds awesome!! Keeping you in my thoughts.

    ReplyDelete
  13. PRAYING FOR ALL OF YOU♥
    So encouraging to read of Eleni's progress: eager for your updates!
    msstitcher1214@gmail.com

    ReplyDelete
  14. Keep your faith! That is an indispensable part of Eleni's journey! Every little step matters. It really matters! Never give up!

    ReplyDelete
  15. Oh, Rachel, this is very encouraging! Turning to the sound of your voice and also achieving midline are both huge. Thank you also for sharing in your previous post the heartbreak you are experiencing. Like others, I find you coming to my mind at random times during the day and I lift you and your family up in prayer.

    ReplyDelete
  16. This is amazing and so encouraging! I am glad you did the research and that there is hope. Even a little improvement is something she wouldn't have had before.

    ReplyDelete
  17. that is a blessing to see such change! Do you also do these exercises with her at home, physio? or is it enough for it to be done by the professionals at the clinic?

    ReplyDelete
    Replies
    1. I wish I could do ABM at home! The way the practitioner interacts with her is not something simple to pick up. I hope I might have the chance to learn a few things, but have not been able to yet.

      Delete
  18. Rachel, it is so exciting to hear about Eleni's progress!!!! So grateful to know you have discovered some new therapy to help her develop! I can only imagine the heartbreak and angst you must feel, but please know that even though we have never met face-to-face I feel as if I have come to know you through your blog. Since before Eleni was born I visited your site at least once a day and now several times a day, checking for updates on your beautiful little girl. You are on my mind, in my heart, and in my thoughts and prayers daily. Never give up hope!! You are already doing amazing things for Eleni and your family!!! Sending you thoughts and hugs.
    From Diana in TX

    ReplyDelete
  19. Your willingness to be so open in sharing your story and your gritty honesty are humbling. I think of you and your family often - I'm certain there is no better family for this beautiful little girl to have been born into.

    ReplyDelete
  20. Rachel - this new treatment sounds amazing and it sounds like it is helping. To have Eleni turn to look at you must truly by wonderful! I am.so happy for you and your family and hope this treatment continue to work. As always you and your family are in my thoughts and prayers - Camille

    ReplyDelete
  21. Rachel - this new treatment sounds amazing and it sounds like it is helping. To have Eleni turn to look at you must truly by wonderful! I am.so happy for you and your family and hope this treatment continue to work. As always you and your family are in my thoughts and prayers - Camille

    ReplyDelete
  22. Rachel - this new treatment sounds amazing and it sounds like it is helping. To have Eleni turn to look at you must truly by wonderful! I am.so happy for you and your family and hope this treatment continue to work. As always you and your family are in my thoughts and prayers - Camille

    ReplyDelete
  23. I love hearing your updates about Eleni, and am so happy that you have been blessed with this new milestone. Though our stories differ - our youngest too lost oxygen at birth and had trouble hearing. I remember all the hurdles and horrible news imparted to us over time, but this boy, who we prayed and fought for - graduated from college - and surpassed all boundaries - through God's unfailing Grace. Keep Faith - God answers prayers - even today!

    ReplyDelete
  24. Such nice news to read! This will help those who follow you on this difficult path. Prayers for you and your sweet family.

    ReplyDelete
  25. So happy to Heat about eleni's progress!
    Stay strong, eleni!
    Good thoughts to you, Rachel!

    ReplyDelete
  26. Mountains are climbed one step at a time. And the view will be worth every step.
    She is so strong isn't she, I think she gets it from her mama ;)
    I do love that green!
    Have a wonderful weekend.

    ReplyDelete
  27. Yay for making progress, this is great news!

    ReplyDelete
  28. Thanks for sharing your story with us...

    ReplyDelete
  29. As the Advocate for that girl, you are the ones who will make the decisions and say yes or No to the health professionals. A long and difficult road which I traveled with my husband who is a medical professional and became desperately ill with a mystery virus. Rachel you are a strong and bright young woman - cry when you need to and know that you are surrounded with love.

    ReplyDelete
  30. What wonderful news! I hope you keep seeing progress!

    ReplyDelete
  31. Thank you for the update- I cheer along with you when I hear if Eleni's progress! I applaud you for trying something new- it's hard to hope that something will work while knowing that it may not. Keep hoping! Deform my own medical problems I have learned the hard way that the 'medical establishment' is just a small part of the options out there and often they are unable to help very much. I have tried alternative therapies with some success so I say Continue on! Thank you for sharing so much if your family with us!

    ReplyDelete
  32. One thing I've noticed with all four of my children is that very often when they learned a new thing, they would do it a few times and then seemingly forget about it for days or even weeks, and then all of a sudden start doing it again, and better than before. It's like it was kind of percolating in their brain for a while. But I am thrilled for the progress that Eleni is making, slow and agonizing as it may be. Our youngest was born last July, 7 weeks early and about another 5 weeks behind in size. It has been an anxious year at times, watching for milestones, wondering if he's caught up at all, wondering when he will grow to be a more "normal" size. It's so hard to be patient!

    ReplyDelete
  33. Do it! what have you got to lose? Maybe a little time and money. Well, time goes by whether you do something or not, and money almost always works it's way out.....

    ReplyDelete
  34. I have a friend whose child has Down syndrome and they did non traditional therapy and 10 years later the therapy was standard practice. Someone has to try the new stuff. Believe that it works, but don't expect miracles just progress. Nothing can happen without trying and this a a way to try.

    ReplyDelete
  35. I'm so glad that you and Elieni are making progress!!

    ReplyDelete
  36. Good for you. You are fighting for your sweet Eleni and she is so very fortunate to have you in her corner. I'll be looking forward to hearing more and am very excited to hear about these positive steps.

    ReplyDelete
  37. Holding positive thoughts for you and your family. Eleni is such a sweet baby. My distant cousin's daughter has CP, I don't know how severe, but she graduated college and is now working. Her speech has improved so much over the years. There's hope...

    ReplyDelete
  38. Dear Rachel, I'm so happy to read about the progress and please, please follow your instinct! It seems that you feel the beat way to help Eleni. She is such a cute little girl and the pictures show that she's feeling good at that time. That is so important.
    Wish you all the best and more good luck for the future and the next lessons.
    Greetings from Germany, Rike

    ReplyDelete
  39. She is gorgeous! Sleep is healing, also her brain is processing the therapy!

    ReplyDelete
  40. Your dear girl is so sweet. I hope you continue to see progress with the treatments. Amazing things happen and are discovered all the time - who knows, years down the track we may look back and think how crazy it was that this wasn't the treatment all the time.

    ReplyDelete
  41. I am an (adult) OT and went "yay!" at your comment about "non-treatable" wording. Agreed! Please do continue to celebrate and share the small steps, for in the end change is just a collection of all these small steps! That is SO EXCITING her turning back and forth between your voice and your mom's. And the mid-line Such such big steps! And you are right - change doesn't have to be constant to be real! There are so many things going on - learning takes energy - and her little brain is working away to process and integrate what she is learning. And just like us, there will be days when things "click" easier and when they are harder! When we learn a new skill it isn't consistent right away either. Sending love and well wishes are prayers your way!

    ReplyDelete
  42. Great news! Going to the midline is a big step, and I hope this means the therapy will be very helpful to Eleni.

    ReplyDelete
  43. I had just started following your blog when your news of Eleni's birth was shared. I am so touched by your stories and now by this new journey, and good for you for taking this road and doing all you can to help your beautiful little daughter be all she can be. It sounds very hopeful, particularly after seeing Wendy's perspective as a PT (comment #4).

    ReplyDelete
  44. Eleni is so beautiful. How wonderful you've found some therapy that sounds like it is working. May God continue to direct you on your path. Thank YOU, for sharing your journey with us.

    ReplyDelete
  45. Stay strong. I hope our good thoughts and many, many prayers continue to lift you and your family, Rachel. I believe so strongly in the power of prayer and, most importantly in the dogged determination of you and your very special family.

    ReplyDelete
  46. This may sound strange, but thanks for the background information on CP and the therapy. I wasn't sure what CP was exactly so it was really helpful! And kudos to you for doing research and being willing to try treatments that have potential to help little Eleni. Glad to hear she is making progress, no matter how slow it may seem! Continued prayers coming your way. :)

    ReplyDelete
  47. such a beautiful baby. It is so wonderful that you are such a strong advocate for her! I am so glad to read that she is experiencing these little victories.

    :) Kelly @ My Quilt Infatuation

    ReplyDelete
  48. I read your post earlier this week although didn't get a chance to comment. Now reading this post too, my heart is full for you Rachel! I don't know what to say, other than that I admire your courage, determination and love. I think of you often and will continue to do so!

    ReplyDelete
  49. A journey of a thousand miles starts with a single step. Keep walking! Hugs.

    ReplyDelete
  50. Only if you stop will her progress stop. Such a difference in her from your last post. Your heart must have melted when she recognized your voice and turned toward you!

    ReplyDelete
  51. You are so brave and strong. Your story has such power. Prayers for the best outcome are on their way, every day! Kaaren in CA

    ReplyDelete
  52. Such encouraging news! Hurray to your friend for finding this therapy. Sorry insurance doesn't cover the treatment but I know you will continue on. It really seems to be working. Your post just made my day! I'm looking forward to more updates. You're all on my prayer list. And Eleni is BEAUTIFUL!

    ReplyDelete
  53. Dear Rachel, Eleni is beautiful.
    I pray for all of you daily. I think about all of you often.
    This is wonderful to learn about these therapies. Eleni deserves this. We are so fortunate to live in a time with such brilliant people. I am so thankful for them,
    Oh my goodness, she is so cute. Eleni is so fortunate to have you for her mama, Gosh I am so happy about that too

    ReplyDelete
  54. Oh Rachel, I cried when you said she looked at you! WOW!
    Please let us know if this therapy becomes too expensive, you know we'd love to help.
    xxx

    ReplyDelete
  55. Well I cried too ! I know your heart must break with all you have endured since her birth . These are great strides. You must celebrate these strides and cherish them. Remember you are Eleni's advocate . Everything you do DOES make a difference. Many,Many blessings to you and your family.

    ReplyDelete
  56. Your Eleni is a beautiful little girl! I am thrilled to hear of her progress. It may be small and slow, but it is there. We will all say prayers that she keeps progressing. Hugs.

    ReplyDelete
  57. such a sweet beautiful girl - there should always be hope

    ReplyDelete
  58. I'm so excited for you. ..what a blessing to see these changes! There are so many alternative therapies that medicine doesn't always give a fair shake to.

    ReplyDelete
  59. I was delighted to see Eleni, 3 months as your blog title today, I couldn't wait to catch up! She's beautiful and I'm so happy to hear of her progress. What a wonderfully supportive, determined, loving family Eleni has been blessed with! Keeping you all in my prayers

    ReplyDelete
  60. Beautiful little baby and a beautiful mama too.I was SO happy to hear about Eleni's progress. I'm so glad that you are finding out about every possible treatment for her; it WILL make a difference. PLEASE let us know if these treatments become too much of a financial burden. Sending good thoughts to your entire family.

    ReplyDelete
  61. How beautiful Eleni is and how lucky to have a mum like you. Keep up the therapy with her, it sounds so positive and I'm so happy that she is responding to you - I can only imagine how you feel when she does. Love hearing about her, thank you for sharing.

    ReplyDelete
  62. regardless of where life leads Eleni, you will always know that you did everything possible for your child and she will know that you love her! God bless you.

    ReplyDelete
  63. God bless your friend for giving you the book. Your results sound encouraging. There is constantly so much new in the medical world that doctors don't know about. You really have to do a lot of research on your own and try everything.

    ReplyDelete
  64. So so so encouraging. This little one was brought into your family to be Loved and cared for by you because you are such a strong momma, and you are so willing to fight for her. I can't wait to hear more on what she accomplishes!

    ReplyDelete
  65. Such encouraging news! Tears in my eyes when you described her head turning to you. Am praying for you and your family consistently. Will now pray for the ABM sessions.

    ReplyDelete
  66. Wow!!! Your little Eleni is so blessed to have you two as her parents. Never, ever give up hope! xoxo

    ReplyDelete
  67. If you were to put a donate button on your sidebar, I would be happy to donate a few dollares each month to help with Eleni's therapy costs. If many of your blog followers donated a few dollars each we could take a bit of financial worry off your shoulders.
    This therapy sounds promising. Just let me (us ) know how to donate.

    ReplyDelete
  68. Keep going, it is working. Turning to the sound of your voice and your Mothers's voice is very encouraging. Lots of hugs for you and Eleni.

    ReplyDelete
  69. Eleni is so beautiful and I think you are doing the right thing. Sounds very promising even though you have times of despair don't let it stop you from continuing. She is lucky to have you and you her, it's all in God's hands. Love and prayers for you and Eleni!

    ReplyDelete
  70. Wonderful news that she is making progress! My husband has been doing CP research at OU. They use a moterized board with wheels that allows them to explore their surroundings before they can crawl. It's really cool.

    ReplyDelete
  71. Good on you Rachel for challenging the status quo! I'm so glad the ABM is helping and you are seeing improvements in Eleni's movements. Keeping following your motherly instincts and doing all you can for her. Its so important to get help as early as possible to try and ensure its a molehill rather than a mountain that Eleni faces if you know what I mean. Sending well wishes your way xcx

    ReplyDelete
  72. I'm so grateful for your willingness to share your journey with those of us following your blog. It is a beautiful journey in its own delicate and struggling way. I'm sure you are seeing growth. I have two friends who have children with CP - their children can do SO much more than the Drs originally told them. Each milestone is so much more profound and glorious than the last because those milestones are precious and hard won. May God guide you, your family, and your sweet baby as you continue to research and work toward improvement.

    ReplyDelete
  73. This is wonderful to hear. As her parents I am sure you will intuitively know what is best for her. Keep following your instincts and the Lord shall guide your paths.May God bless you all. Kisses and prayers for sweet Eleni.

    ReplyDelete
  74. Oh, Rachel. This is such thrilling news! Serious props to you for following your gut instinct and stepping out of the doctors' comfort zones. Tiny improvements in tiny humans are huge improvements!

    ReplyDelete
  75. I’m so thrilled for you to hear the ABM therapy might be working for Eleni! Keeping my fingers crossed and thinking of your family a lot!!

    ReplyDelete
  76. That is such good news! Sending good thoughts your way! and I love the photos.

    ReplyDelete
  77. she is so beautiful-positive thoughts going out to her and you

    ReplyDelete
  78. The human body is so very amazing. So you found these treatments and have seen some improvement!

    ReplyDelete
  79. Eleni has been gifted to the perfect mother for her. Progress may be slow or inconsistent but it is still progress. Never be deterred by the negativity of 'professionals', mother knows best xx

    ReplyDelete
  80. What great news. I cross my fingers that she continues to learn. Go, Eleni, go!

    ReplyDelete
  81. What great news. I cross my fingers that she continues to learn. Go, Eleni, go!

    ReplyDelete
  82. What great news. I cross my fingers that she continues to learn. Go, Eleni, go!

    ReplyDelete
  83. Baby Eleni is so precious..thank you for sharing her with us! The ABM news is amazing and my family and I cheer you on!! Believe it, and you will see it!!!! Hugs and love from Montana

    ReplyDelete
  84. I agree with everyone else - what a wonderful Mum you are for Eleni, and how precious to see her turning towards you at the sound of your voice. Thanks for sharing with us xx

    ReplyDelete
  85. I'd like to congratulate to sweet Eleni: she has chosen a wonderful mother who is fighting for her. And don't listen too much to all these medical specialist who do not believe in what hasn't been prooved. there is so much in our lifes which is beyond science. But listen and talk to other parents with similar experiences - they are real specialists. And listen to your heart! Thank you for sharing with us all.
    xo Eva

    ReplyDelete
  86. So glad you take time to learn about cerebral palsy and try new techniques. I suppose is really hard that after some improvements it seems like nothing happens, but I am sure the improvements would be huge. Thanks for keeping up with Eleni's health.

    ReplyDelete
  87. Guess my previous post didn't publish. Just wanted you to contact your local United Cerebral Palsy center. They have given our family free respite care, contacts for free therapies, diapers, meds provided by our state offices, etc. They are invaluable. Yay for Eleni's major progress for your entire family. Mary

    ReplyDelete
  88. How wonderful. I am sure these treatments are expensive. So please lets us, who feel so much for your sweet daughter, know how we can help. Another auction, a go fund account - please let us help you. Feel free to reach me via email if I can in any way assist - dlbafamily@reagan.com.. PS: I know, a random stranger but truly my heart is moved to help in any way I can.

    ReplyDelete
  89. When I was a young teen (I'm 61 now), I helped with "patterning" a child in the neighborhood who had a severe brain injury from a series of strokes. Her parents consulted with the Institutes for the Achievement of Human Potential in Philadelphia (http://www.iahp.org). They had encountered the same answers from the medical establishment that you have (see how things haven't changed much in 50 years?). IAHP helped that child immensely. I wish you great success with this path you have chosen. Last night after reading your post, I read all about Anat Baniel. I even bought her book, "Move Into Life". Maybe her methods will help me retain mobility as I age. :) I very much enjoy your blog, and love reading about Eleni!

    ReplyDelete
    Replies
    1. @RNC- i thought I'd heard of this type of therapy before."Patterning" was a new therapy 50 years ago and I remember all of the youngsters that it helped.I used it when my baby was born at 28 weeks and 1 kg.(2lbs 2oz).It did indeed make a lot of sense and it helped my child (who had developmental and physical disabilities) to make the most of her life.Music and singing lots of VERY repetetive nursery rhymes helped with speech and respiration too.My daughter didn't walk till she was 26 months but she read and sang songs much earlier.:-)She went through mainstream school and has GCSE's (the new name for O Levels) Follow your instincts and remember that the work you do with your gorgeous baby now will make such a difference to her growth and progress.Lots of luck and strength to keep fighting for the best for Eleni.X Beth (UK)

      Delete
  90. There is nothing impossible for God! She is a beautiful baby girl and adored, loved, and treasured! Whether she has disabilities or not, she brings delight to your hearts and that's all that matters. I pray that these treatments help her. Thank you for sharing your story with the public world when it would be easy to not. Your courage does not go unnoticed. Blessings to you and your family.

    ReplyDelete
  91. Please keep telling us. This is a great journal for you. By writing these little steps down, you have a wonderful record. Memories are extremely fallible, but a written record is there as proof. What you wrote about Eleni turning her head to your voice, then your mother's and again to your's is great proof to your doctor and to a scientist. You can read this on a dark day as proof to yourself that yes, it happened. Learning is recursive and it ebbs sometimes. By having it in writing, you know it happened once and it will relearn and happen so often again it will become invincible! Everyone who reads your blog is cheering!

    ReplyDelete
  92. How wonderful that Eleni is making good progress. Every parent should do what they think is best for their child and you are doing that for Eleni. Thank you for being brave and sharing in your journey with Eleni.

    ReplyDelete
  93. We were blessed to find therapists and a neurologist who felt that little brains were full of elasticity when my son was born after having a stroke in uetero (40% of the left hemisphere is missing). The Lord made up for what we couldn't accomplish, and he wouldn't be able to walk assisted, see with glasses, and be (mostly) seizure free with medication, with out that. Continue doing everything you can! Now that I'm thinking about it, our neurologist moved to North Carolina (could be South) to teach at one of the universities. He's one of the best in the US. Harvey Morgan. I think you live in one of those states. I would highly recommend him. Also, you might want to look into sensory integration if you haven't already. You are an amazing mother! She's lucky to have you!

    ReplyDelete
  94. Sorry, Harley B Morgan, and he lives in South Carolina.

    ReplyDelete
  95. I've been following your story and I'm so glad to hear of some hope. Praying for you all.

    ReplyDelete
  96. I believe you should try everything. I have a nephew that had a very bleak prognosis at birth. he walks with a walker, he has perfect speech, he reads and does math! They said he would be blind because he only had one optic nerve and that one was not completely functioning. His sight is poor, but he can SEE. He is 10 yrs old and is amazing. His brain made new paths because of early intervention. It's hard and time consuming and expensive and exhausting but soooo worth it! You go girl!

    ReplyDelete
  97. Rachael, what exciting news - she is tracking your voices! I am so happy to read your update on your precious Eleni. I believe that early intervention is the KEY to progress with any situation - and certainly the unknowns with a CP child are great. Congratulations on taking the road less traveled and may the journey bring all that your heart desires. Keep this beautiful journal going - for yourself, your family and all of us out here praying and praying for your family and especially your beautiful baby Eleni.

    ReplyDelete
  98. Rachael, what exciting news - she is tracking your voices! I am so happy to read your update on your precious Eleni. I believe that early intervention is the KEY to progress with any situation - and certainly the unknowns with a CP child are great. Congratulations on taking the road less traveled and may the journey bring all that your heart desires. Keep this beautiful journal going - for yourself, your family and all of us out here praying and praying for your family and especially your beautiful baby Eleni.

    ReplyDelete
  99. Rachel, I've been following your blog for sometime and love your work, wished you well and felt your heartbreak. This breakthrough with little Eleni has made me so happy. I know it's not about me but I'm so happy. It's hope and love and so much to be positive about.. God bless you and your family. You do so much in sharing. Thank you.

    ReplyDelete
  100. I'm so pleased for you all with this progress. I love that you are documenting it on your blog (or perhaps elsewhere also) for future parents that may be in this position. Wishing you all the very best.

    ReplyDelete
  101. It takes courage to seek alternative treatments but personal experience has proven to me that conventional medicine is often wrong and does not keep up with breakthroughs even within the medical community. Good for you to seek this therapy. Keep up with the positive thoughts and your patience even when the evidence isn't clear. Continued thoughts and prayers for you and beautiful Eleni.

    ReplyDelete
  102. Oh, so thrilled that Eleni has turned to your voice and looked you in the eyes! The therapy sounds very sensible and since 'early intervention' seems to be the buzzword for other disabilities, I don't see why it shouldn't be also for CP. Once again, thank you for sharing.

    ReplyDelete
  103. You are a wonderful Mother. Keep up the good work.

    ReplyDelete
  104. Precious baby and wonderful Mommy!!! You have the right instincts for what your sweet little baby needs. Mama knows best!!! Hang in there and know that you have many other Mom's praying for you and your family.

    ReplyDelete
  105. I am so honored and touched that you're willing to share with us what's happening with little Eleni. Your strength has been so inspiring. I think as a mother, you would do anything to try to help your baby and like you said, you won't know the difference unless you can go back in time, but I think... if it's not hurting, go for it!!! I pray for Eleni and you and your family.

    ReplyDelete
  106. Often I think this journey through life is a race, when actually is a path of many, many small steps. The people who come along beside us to help us are God-sent for a special reason - it may be a kind word at weary moment, a point of view to be considered, encouragement, a friend to listen, a quilter to get you over a hump, or you to help one of us. Caring enough to share and help others is a great sign of courage. Look at the posts and then multiply that by a huge number for those who can't find the words to write to you. I've found that in difficult times some don't know what to say and so they say nothing. Silence can speak volumes. I hope you take that silence as unspoken support.

    ReplyDelete
  107. God bless your sweet, sweet angel! God bless you, too! Trust your instincts when it comes to fighting for what your babe needs!
    Thanks for sharing your journey and know my prayers for you all continue.

    ReplyDelete
  108. This is exciting news!! Did the therapist give you any therapies/activities along the lines of the ABM treatments to do at home? Physical therapy routines can be so helpful! Especially with momma's helping hands.
    I'm sorry for your and your families struggles, but know that you are doing a great job dealing with them and loving your little girl!

    ReplyDelete
  109. With you in finding joy in every small (and great!) step of your journey.

    ReplyDelete
  110. This is so very wonderful, and I'm so glad that you found that treatment! I am a HUGE believer in alternative healing (years of teaching and practicing yoga have certainly helped!), and movement is so key. This is very exciting news, and as much as life is one huge unknown, we will share your excitement and hope and joy. There's no use in worry, but positive brings positive. So much love to you and your family!

    ReplyDelete
  111. Rachel - this is such great news - Thank the Lord your family was led to this amazing treatment for your darling baby.

    ReplyDelete
  112. I watched some of the Anat Baniel videos, and I really like her approach (usually I'm rather critical of "alternative" methods that patients have to pay for out of their own pockets, but her form of physiotherapy is very sensible (and having gone through years of therapy with our son, I think I understand a little of the background). We went through similar therapy with our son (Bobath, this was covered by health insurance), and of course you can never tell how he would have developed without it, I personally believe it was crucial for his physical (and therefore also mental) abilities. Going midline is wonderful! I personally think you should try as much as you can (but of course only as much as you can handle). If you have the feeling it helps just a little bit, go for it.

    Maybe you should think about a donation bar in your blog, as someone above mentioned? I know this is a big thing to think about, but if you just put it there quietly... - I think it might be a good idea.
    All the best!

    ReplyDelete
  113. Rachel, thank you for sharing an update on beautiful Eleni with us. I will keep her in my prayers.

    ReplyDelete
  114. Yea for Eleni! You will always be your baby's best advocate. She is adorable!

    ReplyDelete
  115. What a wonderful update on Eleni. Happy 3 months old little one. Thank you for sharing this journey you and your family are on. Others have said you should consider setting up a way to help with the costs of therapy for Eleni and I agree you should do this. Follow your heart in all things.

    ReplyDelete
  116. Your courage astounds me. I am not certain that you realize the gift of grace you are sharing with those you touch with your story. We are all facing difficulties of one sort or another. You are helping put these things in perspective. On that note....since your are "giving" ....why not accept help with the cost of helping Eleni....I would be honored to contribute. Many blessings to you and your family. Susan

    ReplyDelete
  117. Wish I could hug you right now! Keep up the good work!

    ReplyDelete
  118. Eleni is blessed to have such a strong mother and loving family. Good for you for fighting for her!

    ReplyDelete
  119. She heard you and turned her head ... You've helped her to find a way to communicate this with you - go mum!!!

    ReplyDelete
  120. What a wonderful update. Thank you so much for sharing. Eleni couldn't have wished for a better mother and family. You are doing so very much to give her the very best start possible and it sounds as if she is making brillinat porgress. I continue to leep you all in my thoughts and pray that each day, week, month sees little Eleni reaching new milestones and achievements because no matter how small or how large each and every one is monumental and to celebrated.

    ReplyDelete
  121. Wow, this is so eye opening! I don't have much to add from what everyone has said. Just wanted to tell you how much I'm routing, praying and thinking of you. Eleni is beautiful and you are just a wonderful mother!

    ReplyDelete
  122. Such wonderful news! This literally brought tears to my eyes. Hoping and praying all will continue to improve for your sweet babe.

    ReplyDelete
  123. I have boy/girl twins and my son had a traumatic birth and his brain was deprived of oxygen. He has CP, ataxia (not knowing where he is in relation to other objects. For ex. He cannot do the mcdonalds playground because the tunnels freak him out). He has also been diagnosed with ADD, autism, and has brain damage. The most important part, and the thing we always focus on, is progress. As long as he is making progress, then he is developing. Please keep focusing on your babies progress as compared to herself the day before. My daughter had an easy birth and is typically developing. I never knew twins could be SO different. Keep up the good work. PS. Max's little toes were curled just like Eleni. I knew before you said so that she had low muscle tone... Aka CP.

    ReplyDelete
    Replies
    1. I'm sorry that we have this particular thing (traumatic birth injuries) in common. It's something that should never happen. Interesting though, because Eleni has high muscle tone in her legs/feet/toes. She keeps them clenched like that instead of relaxing them. Is that what your little Max did?

      I very much agree about focusing on progress, not on where she is compared to typical babies. Thanks for the reminder! It seems like every bit of progress is going to be hard won and hard to retain (not to mention expensive), but if we can keep going that's great.

      Delete
  124. This is so amazing and wonderful! I will be keeping little Eleni in my prayers.

    ReplyDelete
  125. That's amazing! Go sweet little koukla, Eleni!

    ReplyDelete

Related Posts with Thumbnails