Wednesday, December 30, 2015

Eleni, 10 months

I have been looking forward to writing this update because things have been looking up this month! I guess that's why I'm looking towards the new year with optimism. Here goes!

Eleni, 10 months

This month baby is photographed on Cottage from Fibs & Fables available at Fabricworm, Intrepid Thread and Fat Quarter Shop.

{Arching}

We solved the mystery of Eleni's arching and twisting habits!  Remember how she tends to lay on the floor with her head to one side and her upper body twisting as if trying to turn?

6-30 repetitive twisting + arching

Here's an example from 4 months old.

Turns out that for Eleni, this behavior is directly related to pain, usually reflux pain.  When her pain or stress become elevated, whether from acid reflux, illness or drug withdrawal, that arching and twisting intensify to "stiff attacks" accompanied by racing pulse, rapid breath and panic.  She becomes "stuck" in a constant stiff arch that we can only somewhat relieve by repositioning her.  When she's feeling very badly and the stiff attacks become near constant, the doctors fear she's having seizures and want to knock her out with heavy meds.  One time in November we allowed them to do so, and she was out cold for about 12 hours.  After that they put her on a seizure medicine as a preventative, even though they weren't sure if the stiff attacks were actual seizure activity.  Whatever they are, they're terrible.  Holding her during those attacks is the most stressful job I've ever had.

But there's good news!  Over the past 45 days we've seen a very clear correlation between pain and those fits.  When she's properly medicated with reflux meds or with Tylenol for post-surgical pain, the stiff attacks disappear all together.  She can even lay on the floor without twisting to one side!  It's incredible to see her body become gradually more relaxed and more able to move after months and months of stiffening.  And, such a relief to us all not to have those fearful attacks striking at all hours.  Such a relief.

Eleni, 10 months

Eleni, 10 months

After her surgery this December Eleni suffered drug withdrawals and serious pain that caused about 5 days of stiff attacks.  During that time she underwent an extended EEG test which confirmed that the attacks are NOT seizures.  They saw no seizure activity on EEG (nor have they ever), so we are weaning her off seizure meds now.  Hurray!

{Surgery}

On December 11th Eleni had a triple surgery:  a nissen fundo to prevent reflux, a supraglottoplasty to help her obstructive apnea and ear tubes to allow her ears to drain so she wasn't trying to hear underwater.  The procedures went smoothly!  Because she was under general anaesthesia during surgery, she was intubated (tube down throat) with a respirator breathing for her by pushing air into her lungs to ensure her safety.  Most babies would be extubated immediately after surgery.  Since Eleni already has trouble breathing and had extra swelling in her throat from throat surgery, she was not able to be safely extubated until over 3 days post surgery.  All that time she was on sedation medicines to keep her calmly asleep.  No one wants to be awake with a tube down the throat.

When they extubated her she easily resumed breathing on her own with simple oxygen assistance via nasal cannula like she uses at home.  The doctors were so happy!  But after that we had a really rough road.  It takes a long time for sedation meds to work out of her little body.  She would cycle between periods of sedation and periods of extremely agitated stiff attacks due to drug withdrawal and pain.  At the time I didn't know for sure what was going on because the doctors tend to assume her attacks are neurological, not pain related since she doesn't cry like a normal baby would.  Now, in retrospect I would demand stronger pain relief for her, because I'm sure that she was in more pain than they expected her to be. 

{Life After Surgery}

Ok, this is the best part!  She's been much better since recovering from her surgery!!!

The apnea surgery was more successful than any of us (including the surgeon) expected it to be.  Eleni hardly snores anymore, never cries out in her sleep (which her ENT feels was related to apnea), her chest does not retract - basically she appears to breathe almost like a normal baby!  Proof positive that her apnea is vastly improved is that she's taking longer naps (30 minutes before; 1 hour + now) and able to be awake, alert for longer periods of time.

Eleni, 10 months

The nissen surgery to prevent her from spitting up was mostly successful.  Reflux doesn't come all the way up out of her mouth anymore.  She does retch, as if trying to throw up, during most feeds, but it's very short lived and definitely more comfortable for her than pre-surgery.  She will do a quick retch and then swallow and be fine.  However, the reflux does seem to be coming into her throat somewhat, thus triggering her to swallow.  Sometimes she is having pain with that retch/swallow.  I was hoping it would resolve as her surgical site heals, but it's possible she may need to continue on reflux meds to control that pain.  Regardless the nissen surgery is a win for Eleni.  There is less chance for reflux to hurt her throat, plus she's never having to spit, choke or attempt to swallow that sour stuff.

And the ear tubes!  Gosh, I wish someone had recommended those earlier.  Since her surgery she's been so much more responsive to sound!  Yesterday morning I accidentally woke Eleni up for the first time with a sudden sound.  Over the past weeks she has made it clear that she hears; it's just a question of if she can hear the full range of sounds and with both ears.   What a relief!

Eleni, 10 months

We have had days and days strung together enjoying a pain-free, well-rested baby.  And I say "enjoying" because I mean it.  She has been making frequent eye contact.  She has been vocalizing with an actual, small voice and crying a bit to tell us when she's unhappy or hungry.  She even almost smiled.  When she responded to my voice comforting her and relaxed her stiffening body, I fought back happy tears.  I felt then for the first time that we have a real relationship.

Eleni seems no closer to rolling.  She hasn't smiled and still needs oxygen every day, but... BUT she's a whole new baby.  With improved sleep quality she's able to be fully awake, alert and responsive.  It makes a world of difference.  Her ABM session post-surgery this December was her best experience yet.  We could all tell that she was paying so much attention to her body and to the practitioner.  Eleni was using her eyes to find her therapist again and again, and even making some happy sounds to her (happy sounds are totally a new thing)!  One time I realized Eleni had been awake for 2.5 hours on a ABM therapy day, and she still didn't look tired!  I had to put her to sleep.  Another first!

Eleni, 10 months

So, Happy New Year!  Let's try this whole "I have a baby" thing again.  I believe it's going to be better than the 2015 version.


157 comments:

  1. Rejoicing and celebrating grace in the not so little things!

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  2. Oh, Rachel, I am crying happy tears for you!! Reading these posts has been so challenging, but I am constantly amazed by your honesty--with us and with yourself--and your constant trust and perseverance. Not getting what we want is always hard, but dreaming of a baby and having the reality be so different has derailed many other families. You and your family amaze me, and I know with full certainty that your trust and hope and deep, deep love is what's holding it together. We continue to pray for you over here, and I am so grateful that you've shared all of this. What an incredible chance you're giving all of us to see what love looks like day in and day out, even when reality doesn't look like what we expected it would.

    Happy new year, to you--am so excited to see that it's going to be a good one!!

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  3. This post made me so happy! I'm thrilled that you are seeing positive progress. I'm sure it's still a long road ahead and I'll be thinking of you!!
    (long time lurker)

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  4. I have been following your journey since before Eleni was born, and I'm over the moon to hear the news of your progress. Best wishes for your entire family in the new year!

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  5. This is all fantastic news! I'm so glad all that surgery was for good and that your sweet baby feels so much better. You can even see it in the pictures.

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  6. So, so happy for you and Eleni! May 2016 bring all of you much happiness, joy and success!

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  7. Oh goodness! She's beautiful and I'm so excited for happy noises. Surgeries are scary even for adults so I'm happy to hear they were beneficial. I can't wait to hear more about her progress.

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  8. I'm so happy that her surgeries went well and that she is enjoying your snuggling!!!

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  9. Joyous news! I’m thrilled for Eleni, you and your family. Feeling well and being able to interact and love/be loved will take her a long way!

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  10. Oh Rachel!! My heart and soul are rejoicing for Eleni, you, and your family! Praise God for all the strength and endurance He has given you this past year! Rejoicing with you for the promise of a new year with endless possibilities :o)

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  11. Joyous news indeed! So glad the surgery has relieved much of her pain.

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  12. What wonderful news! I am so happy for you AND for Eleni who must feel so much better. Those photos of her look like a new child!! I have a feeling 2016 is going to be a better year :) Eleni is obviously a fighter - and her attitude/personality will take her far on this journey. I was especially happy to hear that her response to you has improved (my guess is that she can finally hear your soothing voice and because her pain is managed, she can enjoy your comforting arms!). Happy New Year, Rachel xo

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  13. This post brought tears to my eyes. I am so glad to hear that there have been some improvements. You deserve a glimmer of hope. Eleni is beautiful and I am looking forward to the "almost" becoming a real smile. Lots of love to you.

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  14. what a wonderful thing to read! I'm sure all these surgeries for this little have been horribly stressful for you, but to see a positive end result is so promising. As Eleni adjusts to her new life, I suspect you'll see more and more wonderful things from this precious little girl. You and your family are truly inspiring; continuing to send you all prayers.

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  15. Thank you for sharing this good news. You have made my day!

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  16. Happy Tears for you! All the best for little Eleni! Big hug for you!

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  17. Oooh she's lovely and so many good things happening for her! It must be amazing to see these sweet bits of progress, I know they are hard won. Happy New year to you and your family xx

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  18. Oooh she's lovely and so many good things happening for her! It must be amazing to see these sweet bits of progress, I know they are hard won. Happy New year to you and your family xx

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  19. I'm so, so happy for you and Eleni and wishing you and your whole family a wonderful 2016!!!

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  20. The difference in Eleni's responsiveness is so clear just in the pictures that you took this month! Her progress after the surgeries is so encouraging, and I am glad that you were able to discover the cause of her stiffening fits. How wonderful for her and also for you and the rest of your family!

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  21. Wonderful, wonderful update! So happy for you, for Eleni, and for your family! I hope you all have a wonderful 2016!

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  22. I love her little ponytail!! She already seems more relaxed. This is just the boost you needed, I really do hope these little things keep happening for you xxx

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  23. What a year you have had. So glad to hear that Eleni seems to hear and you have solved some problems. All the best for 2016 to you and your family.

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  24. Oh! Oh! Oh! Such very happy news! Tears are flowing down my face as I rejoice with you. Eleni looks so alert and calm. Love her little ponytail, too. ;) Best wishes to all of you for 2016.

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  25. wow. What wonderful, life-giving news! So pleased (and thankful) for you all, most of all sweet Eleni. wow.

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  26. Really great to hear the progress and the happiness in your voice. Bring on 2016 indeed!! :)

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  27. Oh, what a wonderful update! My throat is constricted with emotion and gladness to read your more upbeat and optimistic words and to hear that Eleni is more comfortable, less in pain, and responding to her beloved mother's voice. I knew all along she felt your presence and comfort, but I can only imagine how powerful it is for you to know and understand that she can feel it. Oh, big hugs, mama. This is big stuff.

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  28. Happy day to have some hope. It makes it so much easier to do all the work

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  29. So glad for the optimism in this post. Life has been so tough for you and your family, but there seems to be a mere glimmer of light at the end of the tunnel to lead you to better times. There are times when I am so overwhelmed by your updates that I realize my weakness and am in awe of the strength you have shown. I wish continued strength and much love for all of you.

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  30. This is wonderful news and I'm so happy for you.

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  31. First off, love her little pigtail! What a great update! So happy for all of you...even I had some happy tears. :)

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  32. I cried reading this update. So happy for continued improvements!

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  33. So happy to have so much good news. Happy New Year indeed!

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  34. I am so glad to hear such positive news, especially to hear that she is in less pain now! You must have been so raw from seeing her stiffen and not being able to help her, not even knowing what exactly is bothering her.
    It is one thing to be desperate for a smile... but it is another thing completely to watch a child suffer and not be able to help...
    Most wonderful news!
    I wish you all the best for 2016.


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    1. P.S. Something completely different: We found Nany R. Finnie's book on "Handling the Young Child with Cerebral Palsy at Home" quite helpful. It's very down-to-earth and practical. I know a lot of libraries stock it, too, so that might be worth a look (anytime in the future, it is for older children, too).

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  35. Wow, what wonderful progress. May 2016 bring even more healing, presence, and strength!

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  36. Such wonderful news, Rachel! I've read every update since Eleni was born and think of you and your family so often. Through it all, I've been so amazed at your deep hope and honesty. Here's to a beautiful 2016 for Eleni and all of you!

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  37. Dear Rachel, I'm so happy that the surgeries has changed things better for sweet Eleni! I do hope that year 2016 will be easier for her, you and your family! You are very strong and positive person. We received sad news about our friend today and I was thinking that not many could find the strenght to continue like you have. Often it's difficult to read your posts, but that's nothing to compare what you are going through. Thank you for sharing. Hugs and all the best for the new year! x Teje

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  38. Wonderful progress!! And I love Eleni's little ponytail :)

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  39. This is all such good news, and very hopeful as you all look towards the future.

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  40. This post and pics make me so so happy for all of you!

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  41. Yay, great news! So happy she's not so uncomfortable!

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  42. Oh Rachel that's awesome! I think about you, Eleni, and your entire family often. I'm also a mom to 2 special needs kiddos w/ disabilities. We too have come so far, but each day brings new challenges. Last December our daughter was in the hospital & got out 2 days before Christmas. This year, she returned to school (8th grade) after 3 1/2 yrs out! If I might be so bold as to offer some advice? I've struggled with who I am/my role in the family, since I'm not needed as much as I was before (which was literally 24/7, you know!) Having sewing/designing hhas helped me w/an identity aside from Mom. So my advice is to make time for Rachel, the individual too, not just Rachel the mom, even when it feels like there's no time. A wise older mom friend described it as putting on your own gasmask in the event of a crash 1st, so that you then are able to help those around you. I hope 2016 brings you even more blessings!

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  43. What an a major milestone for Eleni and your family and how amazing for you to feel joy and love and hope. Eleni looks so much more relaxed in this months photos and if its that easy to spot in a photo then the changes for you much be such a releif. Love to you all

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  44. Yay Rachel! I'm praying that as Eleni's body recovers and rests, that her milestones continue to appear! What good news that you found relief for so many of her ailments when she has no way to give you any signs! Congratulations to you, your family and your medical team! Happy New Year!

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  45. What a blessing. An internet stranger over here is misty eyed with joy for you and your family. Love her little pig tail. :)

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  46. Answered prayers and tender mercies. Bless your heart :)

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  47. I'm so happy to hear that you've had good news, positive improvements and happy baby sounds! Wishing you much more of that in 2016!

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  48. BEST. POST. EVER! Fascinating, wonderful and should be shared with every special needs parent and caregiver there is. I celebrate these discoveries, especially as they are found through considering other root causes and because they were ID'd through your close observation of her! So happy for you..

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  49. I am smiling BIG BIG BIG
    Praise God.
    Fervent prayers continue for all of you.
    We just made our big donation to ABM in Eleni's name ♥️
    She is a superstar!

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    1. and - Eleni is sooo so adorable.
      Yes she knows her mama loves her

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  50. This is wonderful news, Rachel! Rejoicing with you . . .

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  51. Rachel - oh my. Thank you for sharing. I read every word very carefully and over and over again. SO happy for your sweet baby girl. Take good care of your self and your family. xxxxx

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  52. I always read your posts, never wanted to comment (I have four kids, English is not my native language, thus did not know how to express myself), but now I am so happy for you that you have good news for Eleni, that I just had to tell you, it is wonderful...

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  53. So Glad to hear December has been a better month. What a relief that she can sleep better, hear better and reflux is better. Rejoicing with you at all of this good news. Prayers continue.

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  54. Wonderful, I am so happy for your good news. I wish you and your family a lot of strenght and many happy hours for 2016.
    Happy New Year from Berlin, Germany

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  55. I am so happy for you and your family, may many small improvements grace your family in 2016!

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  56. What wonderful progress for your family! Such great news. Sleep and oxygen = growth there will be no stopping the leaps and bounds she will move forward now.
    Not to make it all about me but I get how something small can make a difference, after 7 years of chronic bowel issues a simple 2gm dose of medication has made such a difference to my life and I feel GREAT!

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  57. So nice to read that Eleni is feeling better! I could feel the joy in your words for her !

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  58. Oh yay!! Too often I don't comment because I read your post on my email, and I comment to myself or my family instead...but today I had to cheer with you, and wish you and your family a NEW year, and many happinesses to go with it!! <3

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  59. So happy about Eleni's progress!

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  60. Such happy news, I'm so happy for you.

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  61. Such wonderful news and progress - yay Eleni! So glad the surgeries were a success and that she is showing a new side. And - I love the little ponytail…absolutely adorable.

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  62. So so happy for you and your family!

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  63. I am always mesmerized by your posts on Eleni! Great news and a hopeful outlook for the new year!

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  64. So happy and thankful for Eleni's progress! Yeah!!

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  65. Way to go, Eleni! Mama, you are doing good things for her by being her advocate. I can only imagine how hard it is, as my 3yo non-verbal, autistic son has an easier time getting his point across, but I definitely applaud you too.

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  66. Hallelujah! God is good. I'm glad you are being able to enjoy your precious baby.

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  67. Very happy to hear the good news. Enjoy your baby and family in the new year.

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  68. I'm so very very happy to hear that the surgeries were a success and that you are figuring out how to make your daughter happier and more comfortable. As soon as your blog post loaded up, I was absolutely stunned to see that first picture of your daughter. Look at her eyes, particularly the left one!!! I've never seen a picture with her so clearly focusing. You and your family have been in my thoughts and prayers often, and will continue to to be. Strength and endurance and patience and hope and joy and love for you all.

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  69. Ms. Rachel. While I am sincerely, really, sincerely sorry for your pain...by God, that Eleni is beautiful!!!!! Oh by Goodness, I just want to pick her up. Hug her and tell her how much she is loved. Please, I realize these are hard times. and they may not get any easier. yet, the little one is loved. you are an amazing mama!!!!!!!!!!!!!!!!!! may the Holy Spirit give you strength and fill you will love and peace.....d

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  70. Praise God. I will continue to pray.

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  71. Such good news!! Praying for many more milestones in 2016!

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  72. Praise be to God for these miracles! This is truly wonderful news, and I am so happy for your family.

    I didn't write a comment back when you posted about your two older children and their journey with Eleni, but I keep coming back in my mind to Conner and Cayden Long's story. Have you heard of them? Two brothers, one with cerebral palsy, and their incredible friendship and the bonding they do through marathons/triathalons. The older brother pushes his brother in a stroller, pulls him in a bike trailer, and even pulls him in a small raft during their races. Their love for each other shines so bright, it's amazing. I'm guessing that as Eleni grows, your older two will also find their own unique ways to grow their friendship with (and love for) her.

    May God continue to bless you and your family. Please keep posting these updates! And keep up the tiny pony tails on Eleni - so cute!!

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  73. Hooray!!!! So happy to hear this!!!!

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  74. I have been waiting and waiting to hear the results of Eleni's surgeries. I am so happy to hear the wonderful, wonderful news. I can almost hear the happiness in your voice as I read your post. Wishing you and your family a truly magical 2016!

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  75. Rachel, I don't comment often but have followed your posts through the year, offering thoughts and prayers for you and your family with each one. This is wonderful news and, as another poster noticed, saw that the difference in Eleni with the first photo. Happy New Year to all! Here is to a great 2016!

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  76. Miracles happen every day. So glad to hear some of them happening for your family. Such a wonderful update on Eleni. Happy new year indeed!

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  77. Oh, such good news! I'm so glad her surgeries went well and you are seeing such wonderful results! :)

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  78. I've been following your blog for quite awhile,but have never posted. I wanted to let you know I have been praying for you and your family. I love it that things are improving. My wish is for happiness and peace for y'all.

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  79. I was a NICU nurse for 25 years. The arching is hard to watch. I would tell my moms with special needs babies. It is like you get on a plane going to france. You expect to see the eiffel tower, eat food covered in butter and speak french. The your plane lands in Italy. Wow now you eat spaghetti, look at all the fountains, visit the Pope speak italian. It is not bad. It is just not what you expected. Swaddle her tight in a blanket and sing and talk to her. No direct lights in her face. No loud noises. Warm baths.Put her in her car seat set it on your dryer and run it. talk to the DR about methadone and baclofen. Methadone is a long acting pain reliever start a the smallest dose and the baclofen is a muscle relaxer. No one is happy when they are in pain. Ask to go to a pain DR. They can give injunctions to stop pain. A Peds DR does not know how to handle pain correctly. Glad it is not seizures. Nobody functions correctly when they are in pain. This is about quality of life. It sounds like you are a great mom.

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  80. Happy news for you and your family. Best wishes for continued improvement in 2016.

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  81. What absolutely wonderful news! An answer to many prayers. We will continue to pray for more improvement in 2016. I am so happy for you.

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  82. What a great end to 2015 - best wishes for an amazing 2016 for you all:)))

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  83. Wonderful news!! Happy New Year!

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  84. What a wonderful report! I will keep praying & I look forward to hearing more good things in 2016. Happy New Year to You & your sweet family!

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  85. such wonderful news! Thank you, as always, for sharing your journey. Love to you and yours xxx

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  86. That's such wonderful news Rachel. I have tears of joy in my eyes reading your post. Wishing you and your family a new year full of love and happiness.

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  87. Such wonderful news, Rachel! And the difference is noticeable in the photos - your little girl looks so much more alert and engaged! I'm so happy for all of you, and wish you all the best in the New Year!

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  88. Oh Rachel, I'm so happy after reading your update on Eleni, I'm sure things will turn better during the New Year! Many many happy returns for all your family!
    Love, Myrto

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  89. Yay! It's so great to hear such positivity all round. Here's to 2016!

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  90. Such wonderful news! I'm so happy the surgeries went well and they are really helping her out. Here's to a wonderful 2016 for you all!

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  91. So glad you have so much positive news to share and hope for the future as you begin to develop a relationship with little Eleni.

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  92. You can see it in your pictures. The first thing I noticed was her making eye contact and she looked so responsive. Wonderful news. Here's to more progress in 2016.

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  93. oh, what wonderful news! I knew as soon as I saw that first picture that she was getting better, and you'd have some good news for us in this post! I'm glad for you- and I can not even imagine what you've been going through and dealing with these last 10 months... I have nothing to compare it to. but- I can see that you're handling it with grace, patience and love. good job: and you're a great mama- to ALL THREE!!!

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  94. I could see the change in Eleni as soon as I saw her picture today. I am happy for you and for her. That smile is coming. Blessings to you and your family during this holy season.

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  95. I'm all happy teary eyed and can't find the words

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  96. The most precious moments for a mother are when she and her child can interact and soothe each other in their own little world of mother/child. I am so happy to see that you feel a relationship evolving!! What wonderful news. I am so happy for you.

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  97. Eleni looks so much more relaxed and alert ~ such good news! I'm so pleased and happy for all of you!
    Thank you for including all of us in your journey with Eleni ~ you are all strong and compassionate people.

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  98. I can see a bit of that smile in the 10 month photo. So happy for you Rachel. I so admire you. It takes a lot of courage to take this journey and share it with others. A Joyful New Year to you and your family. Barbara R

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  99. Such happy news!! Thank you for sharing. Keep praying!

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  100. Even before reading, I thought "her picture looks like she's focused in on what's in front of her" and lo and behold - she was! Congratulations on good news and huge strides! This totally made me cry in joyous tears. Also, what a huge blessing that you were able to keep pushing through the low points this year so that you could come to see & experience these gains. Blessed & Happy New Year to you.

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  101. Oh Rachel! I am so pleased to hear such a good report and am so happy that you can go into the new year with renewed hope.
    Praying many blesses for you and your precious family ~ Tracy

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  102. Thanks to God! I have read your blog faithfully from the very beginning. However, I rarely ever comment. I am so thankful to hear of these incredible progressions. Your family has been in my heart and prayers for so long.

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  103. So pleased for you all. You are an amazing family. Love abounds in your home, it is clear for all to see xx

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  104. Yey!!! :) :) :) happy new year!! A bit hug for you all!! Great news!!

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  105. I am thankfull and praise God, that He helps and leads you and gives you hope and joy in HIM.

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  106. You are an amazing mother, working so hard to help Eleni find her best self! You go girl!

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  107. The first picture is my favorite because she is looking towards the camera for the first time. What a wonderful month for you and your family!

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  108. This just moves me to tears Rachel. Thanking God that things are getting better for Eleni! I can so easily imagine how wonderful it must be to hear her make happy sounds.

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  109. What a beautiful and positive update! I hope things continue to improve for Eleni and your entire family througout 2016!

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  110. I've been following Eleni's progress faithfully each month and I'm so happy with the good news. Good bless you all, Happy 2016 you'll all be in my prayers. Best wishes

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  111. I've been following Eleni's progress faithfully each month and I'm so happy with the good news. Good bless you all, Happy 2016 you'll all be in my prayers. Best wishes

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  112. Oi Rachel, fiquei muito feliz com as notícias sobre Eleni! É assim mesmo, quando menos esperamos o Senhor Jesus vem e "conserta " tudo! tenha fé, ela(e vc) vai coseguir, pois Ele é poderoso para fazer ...muito mais além do que pedimos ou pensamos.... bjs do Brasil, Eva

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  113. I am beyond thrilled for you. When I saw the picture of her making eye contact I knew it would be a positive post. I am so glad you have the strength to keep us updated as to her progress.

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  114. Great News on Eleni's progress.......Happy New Year to you and your family!

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  115. I'm SO happy for her and for you and your entire family!!!! Love,

    Diane W.

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  116. Crying happy tears for you and precious Eleni!!!!! Here's to a happier NEW year for you and your family! xoxo!

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  117. I can't express how happy this makes me for your family. I've prayed for you and Eleni and thought of you so often. It is so good to hear that you are experiencing some hope. 2016 is going to be a wonderful year!

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  118. What wonderful news and what great promise for 2016! Love the hair!

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  119. I can't imagine what a relief it must be for all of you to see these changes. I can well imagine how much better she will do now that she sleeps more. No one can function when they don't have enough sleep, babes or Mums! Wishing all the family a happier 2016 full of firsts!

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  120. Yay! Go Eleni! Happy New Year Rachel. So happy the surgeries went well xx

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  121. Oh good heavens, what a puzzle this baby has been, how much you have persisted and what a joy to hear that you've had some good successes! May 2016 bring your whole family better days (and nights!).

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  122. Happy New Year to you and your beautiful family ... 2016 has such a sweet ring to it that I bet even your littlest can now hear xx

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  123. This is the best thing I could have read today, Rachel! I love to hear your happiness coming through in this post. Love to you all!!!

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  124. Happy, joyful, wonderful news. Thank you for sharing Eleni's progress with us. She is so fortunate to have you for her mama. So so so fortunate. Wishing you a much better year in 2016.

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  125. Amazing! I am thrilled (tears in my eyes) for this good news. I can tell that your heart is 'full'. God is good!

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  126. Yea!! Loved hearing the good news. Thank you God for shepherding this little one and helping her care givers to have wisdom. Hugs to you all. She is so sweet. I know your days have been long as a mom. Will continue to pray for you all. Janita

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  127. What a year 2015 was for you, I'm so happy to see this good news as we head into 2016. It will be so good for Eleni to have her pain under control - no one handles life very well when in pain, it's so wonderful to hear she is now having an easier time participating in her activities. She's a trooper, as are you Mama Trooper. Best wishes to you and your family over the holiday period and all the best for 2016. It looks so promising already! Eleni is so lucky to have such a family x x x

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  128. Thank you so much for sharing these awesome news. I am so glad to hear about Eleni's progress, I cannot imagine how you feel. I am praying that 2016 will bring you and Eleni many more great moments.

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  129. Wow, so much encouragement! We are so thrilled with the positive report. We will continue to hold you all in our thoughts and prayers!

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  130. I wonder who has suffered more these past months: Eleni who is in so much pain or you who have to watch it and care for her! Goodness, you've ben thru a lot together. So happy to hear some of this is being relieved now. :)

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  131. Wonderful news! I love her ponytail. :-)

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  132. Thanks for sharing this positive news! Wauw what a difference this makes. Wishing you and your family lots of good news and love the coming year.
    Groetjes
    Annemieke

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  133. Eleni's progress and your patience is inspiring. Thank you for the heartwarming updates. She is a fighter. Your love and the teamwork is working wonders. I am just thrilled to hear that she is more comfortable and getting good rest.

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  134. Wow! I have goosebumps and tears in my eyes! Such wonderful news. I'm so glad her surgeries went well and were successful. Happy New Year, indeed!

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  135. This is great!! That business of worrying about her pain all the time and feeling helpless in the face of it has to have been just tormenting for you and exhausting! I'm so glad there are improvements, and I want so much for you to get the feedback that she's really in there, looking, hearing, being in the world. They call it reciprocity, and it's what really makes it easier take care of babies, who under the best of circumstances are all-needy. Go Eleni!!

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  136. Blessings. God is good. Its on his time. Kisses to the sweet girl and hugs to the big kids who have been through so much too.

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  137. So glad things are looking up, Rachel. Here's to a bright new year for you and your family!

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  138. Cant express how happy I am for you and your family! Progress! Next year will be so much better!

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  139. Happy tears about clearer hearing! How hopeful and joyful!

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  140. So glad for happy, encouraging news! I can't imagine the lift to a mother-heart that must bring. Sending prayers and wishes for more such progress!

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  141. My dear, I am so happy to read this! I wish you a wonderful 2016!
    best greetings,
    Kathrin

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  142. This is wonderful news! Praise God for the improvements and the connections you are making with her. She is so precious. 2016 is going to bring more good news for Eleni and your family!

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  143. Such wonderful news! I hope the improvements continue through 2016!

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  144. Oh Rachel! Happy tears are seriously rolling down my face. With each paragraph I was saying to myself yes! yes! YES! Even in her pictures this month, you can tell she is more alert and connected. My heart could burst for you both! I know the road is still long ahead, but I am thrilled for your family to have some time of enjoying Eleni with little pain and more connection and celebrating some victories! You and your family are thought of and prayed for often. I don't often comment because my heart just doesn't always know the words to say. Thank you for continuing to allow us in to follow along. xo

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  145. Huge step forward, so happy to hear about this!

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