Wednesday, November 4, 2015

Eleni, 8 months

Eleni, 8 months

This month baby is photographed on Kokka Lighthearted Text available at Sew Modern! 

Oh, my friends, what a difficult time it's been!  I wish I could bring you better news.  We missed our regularly scheduled update because, you guessed it, baby was in the hospital again.  We were discharged on Monday, but this time it felt so different.  Instead of returning home with an optimistic "and now she'll be better" outlook, we brought her home with as many questions and concerns as we had when we arrived in the ER a full week before.  She came home on two new maintenance medications and on an antibiotic for a bacterial infection.  Time will tell if these medications will help her fully heal from whatever began bringing her down mid-September.  Yes, September.  She's been unwell since our trip to Chicago in September, with short periods of improvement followed by repeated set backs.  Fevers, rashes and unpredictable oxygen needs have become a regular part of our life with Eleni.  Her doctors are doing their best to pinpoint what ails her, but if these meds don't fix things we'll be looking at a surgery (or two) in the next month or so as the next step towards getting her well.

It. is. completely. exhausting.

For Eleni too, of course.  Now, back home, we are trying to find what makes her feel better, how to keep those muscle/tension fits at bay, her heart rate down and, if possible, how to encourage her to move.

Eleni, 8 months

Despite the extra muscle tightness that being sick has been holding over her, Eleni has made some progress in the past few months.  I have a foam wedge that baby can roll down unassisted.  Believe it or not, she wasn't able to do that when I first tried early September.  Since she got the hang of it, I've been raising the wedge little by little to make the surface less slanted.  And she can still roll consistently!  So, we're not rolling on flat ground, but we're getting there.

Other progress:
  • Opens and closes her right hand throughout the day.  Still not using the hand, though.
  • Therapist was able to full extend her right wrist yesterday, something we've only been able to do a few times in her life.  It should be noted, that we do not use splints with her.
  • Getting closer to independent rolling.  Has rolled on flat ground from tummy to back and from back to tummy, a few times each way by accident.   
  • From her stomach she has learned to lift and sustain her head up for 30-60 seconds at a time.  She can not hold it for long, but has much more control than previously.
  • Learning to lean on her arms, which helps with sitting and safe falling.
  • Can come to sitting with plenty of assistance.  She's tapping into lots of muscles to participate with this one.
  • Increasing head coordination. For example, when her therapist pulled her arms to bring her to sitting, she brought her head up without a lag and in midline for the first time.
  • Sometimes bringing herself into crawling position with minimal assistance.  She surprised me with this the other night and did it a lot with her therapist yesterday.
  • Started occasionally moving her jaw and opening her mouth.
  • Can localize sound within 8" of her face.
  • Improved visual reflexes in October as compared to her initial exam in July.
  • Made an attempt to track (per Dr. Zelinsky), but no success yet.
In general, Eleni's gross motor skill struggle is not with strength, but with coordination.  The therapist she saw yesterday is an occupational therapist who was seeing Eleni for the 3rd time.  He's remarked over and over again how strong she is and how motivated she is to move.   There are so many brain skills that our baby's rely upon to find their feet, discover posture and choose useful movement patterns.  So much we take for granted that she lacks.

When Eleni is evaluated by therapists or developmental doctors this fall, they often comment that her motor skills are better developed than they would have expected by the way her eyes and face present so absently.  I credit this to her work with Anat Baniel Method (ABM).  Even though she cannot do much yet, the groundwork is there.   She's learned to both extend and contract, to use her spine and her pelvis.  These are the basics that often allude children with cerebral palsy who don't become mobile.   I am eternally grateful for the opportunities she's been given to benefit from ABM and will continue to bring her to lessons so long as her health, my sanity and finances allow.

Eleni, 8 months

When I put her on her tummy today during our photo shoot, she pulled her arms down and scooted her body forward on her stomach.  It made a royal mess of the fabric, but demonstrates how much she wants to move!

Eleni, 8 months

Moments later I caught her "sour face" on camera for the first time.  She makes this pain face many times each day, and we've never known with certainty why.  Possibly the surgery we are considering (called a nissen) will help her feel better.

Eleni, 8 months

My little baby.  Here's something I didn't even know was a "thing" before the early interventionalist asked...  Eleni can be propped in a sitting position.  Woohoo?  That's a good thing.  Really, it is.  Some brain-damaged babies have such low muscle tone that they fall over like a wet noodle immediately.  That she can do this already means it's likely she'll be able to sit in a chair someday.  Eleni has enough trunk stability and spine organization that she can sit propped up like this indefinitely.

Even when she's soooooo sleepy...

Eleni, 8 months

 Eleni, 8 months

And so ready to be done with mama's photoshoot!

Eleni, 8 months

Well done, baby girl.  Let's let her rest.



72 comments:

  1. I love getting your updates on Eleni...and from a physical therapist's perspective, I can reinforce the positive - all the things you describe are so good in terms of developing her balance, and core muscles and propping, etc, etc...Head and trunk control are SO important as building blocks for movement. So good job - both of you! Hard to stay optimistic, I know, but really she has made such good progress!!! I hope you can nail down what is making her sick - frustrating not to have those answers. Keeping good thoughts and prayers that the answers will become less elusive in the coming weeks! I love those last two photos - she is such a beautiful little girl in so many ways!!!

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  2. I had to think about you last night - I saw a German Documentary about a family that is caring for their disabled 5 year old daughter at home. And all the difficulties that brings for her. The girl reminded me so much of Eleni! But later it turned out her diagnosis was different.. I will add the link, nevertheless, quite sure you don't speak German, but just in case....
    The focus of the documentary was about how hard it is financially to care for a disabled child, but they showed some really beautiful sequences about the siblings.

    I can feel your exhaustion, my daughter was in Hospital for 10 days in spring and I was about to snap in the end.

    Wonderful news that she can sit upright, that will be so great for her when she grows!

    I hope that the medication will help Eleni and that she doesn't have to have surgery.
    stay strong, you all! Hugs!

    http://www.zdf.de/ZDFmediathek/kanaluebersicht/aktuellste/402#/beitrag/video/2456744/Die-Pflege-macht-uns-arm!

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  3. I'm always so excited to see Eleni's monthly updates. And I'm thrilled by this one. That list of milestones (even tho they seem minor) is HUGE. What a little beauty she is.

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  4. I hope you are able to rest too, Rachel, or at least find some time for yourself to recuperate sometimes.
    I'm sending you and Eleni, and the rest of the family lots of love!

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  5. I am grateful to hear that your sweet baby has made some progress, even in the midst of her health struggles and set-backs. I hope that she will continue to amaze you in little ways in the coming months.

    A couple of beautiful things I noticed about your baby looking at today's photos: her dimpled chin (so sweet!), her chubby cheeks and legs, and her gorgeous hair. She is beautiful. Thank you for sharing her with us.

    xo

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  6. Thank you for the updates, it's good to have positive news amongst the difficulties too. Love the last two photos! So cute.

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  7. She is such an adorable little girl. I especially love the last picture of her asleep, so sweet!

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  8. Sometimes surgery can be a blessing in disguise. I was a foster parent for kids with disabilities for 8 years (I adopted three of my kids!) and two of my kids had to get surgery for different reasons. Both times it made them feel immensely better. One child was deaf and regained a little hearing and the other child was sick all the time and was rarely sick ever again afterwards (I adopted him so I know).

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  9. Dear Rachel, I love your updates. Eleni is soooo cute, I see, she makes a great progress. Wonderfull photoshooting with the little angel. Zuzana

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  10. She has done so much more than I expected. Prejudices of the ignorant. You have done so much more for her and with her than so many others would have done. Your inner strength is worthy of awe. The pictures today are so sweet and the movement and the strength she shows are just amazing. I know your road is so much harder than I can even imagine, but I continue to pray for all of you and believe that God has a plan.

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  11. Such sweet girl. Your and her efforts are getting results. Now, both of you deserve some rest.

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  12. She is so beautiful. Many hugs to you.

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  13. Oh she is beautiful. What a doll, and I am so happy that she is strong, staying strong despite the health setbacks.
    you mean you do not splint her hands? No, splints are never good.
    She needs to learn, and she will, to use her fingers. You have been told I am sure, that splinting just weakens.
    same with Stroke patients. The PT earlier this year wanted to splint mom's right foot. I said no.
    She needs to learn the exercises to lift her foot at the ankle.
    Eleni is doing okay. All of you continue to be in our prayers. I think about you daily.
    I am so glad you are sewing. I know you need that. Still there are holes in your day that are blocking the smooth path.
    I am so happy to see her sitting up. Your therapist is right, it takes a lot to sit up, babies have to acquire that feeling of balance, that is developed by way of the brain.
    Love always. You do not have to be courageous and brave every day. So many are holding you up. You can count on us.

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  14. Little sausage! (pet name in or family) Keep going girls!!!

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  15. Such a sweet baby with beautiful eyes. If Eleni has been making those pain faces recently, like the past month or so, is it possible that she is teething? My granddaughter is a month older than Eleni and I know she started teething a lot earlier than I expected she would, so maybe Eleni is beginning? Although I'm sure the professionals would have already thought of this.

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    1. Yes, she may be teething too, but she's been making the pain face since the beginning, sadly.

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  16. I'd say that list of progress is very lengthy and shows much to be encouraged about. You're doing good. I know it's hard. Be sure to take care of yourself, too, through all this. Hugs to your other children. I'm sure they are a wealth of support and it will get easier for them to contribute with loving care as Eleni gets bigger. Hope she feels better soon!

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  17. I love reading these updates. Even though Elena has been feeling so poorly, she has still been making such good progress. I hope you are both able to get rest and Eleni will be feeling much better.

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  18. Really glad to read about Eleni's progress! Thanks for writing these thoughtful posts, especially when there must be so many claims on your time and energy. I hope the medications do the trick and Eleni feels better soon.

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  19. Although it sounds like it has been an absolutely hellacious month for you and Eleni, I must say your progress list really took me by surprise. There is a lot of really great stuff happening with Eleni! She's absolutely darling, the falling asleep sitting photos are so adorable! I really hope you can find her some effective treatments so that she can feel better and continue this great work. Hugs to you, mama.

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  20. Eleni updates are my favorite, truly. If you need an anecdote on the Nissen--my little girl had it done at four months old (plus g-tube), and that combination absolutely changed our life. There can be complications, but Bonnie really didn't have any. She's 3 years old now and can still burp and throw up if she really needs to (like with a stomach bug). It definitely helped her gain weight, because she was no longer throwing up 8-12 times a day, and it has protected her fragile lungs from aspiration pneumonia.
    Keep on keeping on, mama. You are a rockstar.

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    1. Thanks for sharing that. I hope we will have such a positive story to share.

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  21. Thank you for another update, even if the ups are clouded by the downs. Eleni is such a little fighter, along with you and your family! You are relentless in your fight for what is best for her, she is very blessed to have such a caring family.

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  22. Wonderful update! You are a fantastic mom!

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  23. of course it is exhausting for both mommy and baby...Grief itself is exhausting, giving baby a chance is exhausting, the unknown is exhausting... But, you do it...step by step, day by day because you are Mommy and you cannot give up. Bravo to you xxoo

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  24. I had a nissen fundoplication done as an adult- in retrospect, had symptoms from at least age 10, probably earlier (I had weird symptoms, so was a long time before I was even treated) Obviously it's invasive, and hopefully just medication works for Eleni, but it really, really improved things for me- would do it again in a second (Even though I'm one of the people who no longer burp/ throw up, and I get some uncomfortable bloating at times, it's soooo much better)
    Also, the last photo in your post is absolutely adorable

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  25. Bravo to you, your husband and sweet children. Because of your love and dedication Eleni has made such GREAT strides. Strength will fill you when you believe your spent because so many continue to pray for you-- you have never been alone in this journey.

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  26. Yes, well done, baby girl and well done, mama.
    I love that last photo, so peaceful and the colors :)

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  27. You have both accomplished so much despite the time in the hospital! I hope you are both getting some rest, and praying that little Eleni starts feeling better soon.

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  28. It's so nice to hear about Eleni's progress- she's seems to be making so much progress in her movements and her strength! I can't imagine how difficult it would be to be in the hospital and see your little baby go through so much! I know you'll keep doing what you have to and I hope you find some encouragement in her small but wonderful new abilities and improvements! I hope she feels better soon!

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  29. Beautiful update and she's such a beautiful little girl. Such progress going on! Will pray for wisdom for the doctor's as they try to find what is causing her health cycles. Will pray for peace and rest for you.

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  30. Oh my goodness, those sleepy photos at the end crack me up! What a little darling. Thank you for the update, the highs and lows are all part of it and I hope Eleni is feeling better soon. It's so frustrating you know what you want to be doing with her but illness puts a stop to it. Hopefully she'll be healthy enough to get back to work on the ABM. Sending love x x x x

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  31. oooh such a little lamb... I hope the meds will speed up the recovery, and that the doctors will soon find out how to alleviate her pain!!

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  32. bless her! She's such a sweetheart. Sorry to hear that she has been unwell for such a long time. Sending you love and strength xx

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  33. I really love reading your updates about Eleni. I feel happy when the news is good and sad when it's not so good. I celebrate each new achievement with you and hold out as much hope that she makes progress with every month that passes. Thank you for sharing! You're an awesome family!

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  34. Precious girl! This months photos are especially beautiful! I always read & think of your family, but I don't comment often. We also have considered a nissen for our child, & I know how difficult the decision making process is. Good wishes for you & your sweet baby, whatever you choose!

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  35. Thank you for sharing updates on Eleni. It is so nice to hear that there is 'hope', and some achievements. That is good news indeed!

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  36. Prayers for her and you go out often! Every time you post anything I pray for you guys. I will pray for her to get better and get back to learning. You should be proud of yourself for not giving in to the notion that she can't learn. As a nurse and working with the disabled I can tell you she can learn. Too many people in the past would give up and they would not meet their full potential but now we know better. The credit goes to you for going beyond traditional medicine and finding other treatments that help her. I hope this makes sense.

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  37. I continue to pray for you and your sweet baby, I know the news is not always great, but any achievement is a good thing, thank you so much for sharing.

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  38. Your love and attention is really helping your baby girl. My prayers are with her and your family. Keep up the great work. Everything you do is a step forward. Blessings.

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  39. Your love and attention is really helping your baby girl. My prayers are with her and your family. Keep up the great work. Everything you do is a step forward. Blessings.

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  40. Bless you as you continue on in this journey. Praying for your whole family as I'm sure it taxes everyone. I love reading the updates. What sweet pictures of her sitting up. Love her quilt too!
    Thank you Lord for progress

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  41. It sounds to me as though Eleni has the same determination as her momma. Good for both of you.

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  42. I continue to pray for you and sweet Eleni. I love reading the updates and seeing her pictures. Keep your head up Mama, you're doing a great job. <3

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  43. All your hard work, love and determination are reflected in Eleni's sweet eyes and in each word you write to us. Keeping you and yours in my thoughts and prayers. Continued strength buoyed by the love and support of all your readers and their messages, Rachel.

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  44. Such great core stability! I hope things settle down again soon. Thinking of you all still x

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  45. thanks for sharing your littlest love with us. Know that love and hugs are coming from afar. Sleepy babies are wonderful too.

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  46. So much progress your sweet lamb has made! I've no doubt that day by day it's so hard, but all your love and dedication are making such a difference for Eleni. You are all in my prayers πŸ’•

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  47. Dear Rachel,
    You are an incredibly loving mother, Eleni is so blessed to have you. Praying for every blessing for you and your family.

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  48. Rachel,
    She is one darling girl! Her early progress is a great indicator of things to come. Be gentle with yourself and know that prayers for you and Miss Cuteness continue.

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  49. I am glad there is some good news and that the hard work is having some results.

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  50. She is such a sweetheart, and so beautiful. That soft skin and hair, I want to kiss it all over. Keep writing, it's wonderful and inspiring to hear how dedicated you are to helping her. She is so lucky to have you as a mother, I hope everything in the future goes well.

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  51. All my love to your darling little girl, you - her mother - and those we don't see often but who are, I am sure, of a great help and support (husband, brother and sister, grand-parents, friends). Best wishes from France, Florence

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  52. I love seeing your monthly updates on Elani and reading how far she is progressing. I loved the first commenters remarks because she knows what she is talking about. How much does Elani look like your other two children when they were babies? Just curious as she is a lovely looking baby. Patti xxxx

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    1. She looks more like Aria than Liam. But, I think Eleni favors my husband's side in general more than my other children. She certainly has her paternal grandmother's chin!

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  54. Sleepy Eleni is just so precious. xo

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  55. Oh Rachel when I saw this post in Feedly I couldn't get to it fast enough. I am always so eager to read about how Eleni is doing. I am so impressed by the gross motor strides. I will continue to pray for you all. You are such a good mama. My heart breaks over the struggles you and sweet Eleni have faced.

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  56. Wow! Eleni is making some really good progress! My heart is happy :)

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  57. Precious little Eleni. Prayers sent to the Good Shepherd to care for this precious little lamb. Thank you for the update. Janita

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  58. Hope you get some rest too x

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  59. that last photo awwwwww so gorgeous so precious <3

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  60. Thank you for sharing your updates on Eleni. She is so cute in the last sequence. You are often in my thoughts, shout out if you need more financial help to continue therapy.

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  61. Darling little one!! She has made such encouraging progress, even in the midst of her pain and sickness. She is a fighter, just like her mama. Looking forward to future updates.

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  62. She's beautiful and wow - all that progress despite being so poorly for so many weeks. I hope she gets a good run of health soon. Those small wins are so important xxxxx

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  63. Oh I'm sorry Eleni has been unwell, and for so long! You must take credit for all her positive progress though. Maybe her 'sour face' was her way of showing you her disapproval of that bright yellow fabric in her face xx

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  64. Sorry baby girl has been ill again. She's beautiful. Thanks for sharing Eleni's progress

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  65. She is such a little sweetheart! I look forward to your updates...bless you allπŸ’•πŸ’•πŸ’•.

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  66. Sending love to you all - especially sweet Eleni!

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  67. Rachel, I rarely comment as I am generally lost for words when it comes to Eleni. I am in awe of your strength, positivity and compassion when you face such difficult odds. I don't think I would be able to stand as strong as you. The way that you cope with something so difficult, which you must want so desperately to fix for your daughter... it is inspiring. Seeing Eleni's "pain face" is so difficult for me, as an outsider. I can only imagine how hard that must be for you to endure. Thank you for your bravery in sharing your story with all of us.

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  68. Eleni is so beautiful! I am amazed at your strength and courage! Many answers to our problems come through faith. Thank Him every day for healing Eleni! No matter what , just thank Him in faith. God still works miracles!

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