Wednesday, July 1, 2015

Eleni, 4 months

Eleni is 4 months old.  It's odd how time contorts under pressure.  It seems like so much more than 4 months of trauma - the shock, the worry, the tears painfully stretching towards hope.  It seems like so much less than 4 months of her babyhood - the cuddles, the lullabies and morning walks.  I'm sure, in part, that's because she hasn't really been with us, peacefully at home so very much.  In fact, this month she was hospitalized for a full week. 

4 months old equals 1/3 of a year old.  It means we're that much closer to deadlines that will shed light on how much functionality she's likely to gain.  It means we're nearing her 6 month follow-up MRI and its accompanying serious diagnosis.  It means that if she doesn't start smiling soon.... will she ever?

And so I still have trouble talking about her in this space because I don't want to burden you with negative energies.  I'm tempted to share only the snapshots that hide her challenges.  Like this gorgeous photo of her still-blue eyes on Carolyn Friedlander's Ladder Lines in Sage.  I chose this fabric exactly for this purpose, to capture that lovely shade of blue while I have yet the chance. Aria's eyes turned from this blue to brown, sometime in her 4th month.  I wonder if Eleni's will too? 

 6-30 pretty eyes

In this photo she looks as healthy and functional as could be...

6-30 ususall holds eyes to one side

But sadly, this is how we normally find Eleni - eyes rolled up and towards the right side.  She does occasionally make eye contact, but not every day.  She has never tracked an object.

6-30 repetitive twisting to right side

She has developed a very strong preference for turning her head to the right and now added to that she'll twist to the right repetitively and with great effort, seaming to try as hard as possible to turn on her side.  Our therapist is not sure if it is a learned, voluntary behavior or a primitive reflex.  I think she looks adorable in the above photo and you may not have given it a second thought, but she's actually resisting as grandma was trying to roll her on her left (not preferred) side. 

6-30 trying to help her untwist

And here grandma gently lifts her legs, hoping to encourage her to relax, rather than repetitively twisting to the right.  See how her head is turned to the right?   It is hard for her to find and maintain midline (looking straight), especially on a hard surface.

Ok, but things aren't all bad.  It's not that she isn't making progress, it's just that I'm not willing to share the good without sharing the bad.  I want to, need to share this journey with you, but not the fake version.  The real deal.

6-30 with grandma

This is my baby girl.  She's sweet, content, generally a good sleeper despite her apnea.  She's still fed breastmilk exclusively via g-tube, but she's growing well and her tummy handles the feeds well.  She likes be rocked, being sung to.  She likes her ABM neuromovement lessons.  She does not like car rides.  In fact, I think she gets car sick!

And, I guess, most of all she likes me?  She does.  But it is hard for me to feel that sometimes, especially on nights when her apnea chases away sleep for 5 1/2 hours or after days strung together without eye contact, never a smile.

5-31, lifting head

Eleni is making progress with holding her head up.  She can bring it up from a slanted position and hold it up as long as she likes.  It stresses her out to be flat on the ground, so we only work on tummy time like this.  She seems to have plenty of strength to arch her head back and to bring it forward, but not the ability to find a balance in a fully upright position.  We always support her head.

6-15, hospitalized

This month she was hospitalized for the second time since NICU, again for a cold virus.  Because of her neurological condition she does not swallow often enough.  When her body makes extra secretions due to a cold, she can't keep up with swallowing them down.  Instead, she aspirates her secretions and her lungs become compromised.  This time she needed more medical assistance to breathe than she ever needed in NICU.  The above photo was taken the day before her release, soon after they removed the IV from her dear little hand.

Over her hospital stay she was diagnosed with obstructive apnea.  This means that her throat flops closed sometimes, often when she is falling asleep or waking up.  A sleep study this July should reveal if she needs oxygen assistance at home or even surgery to protect her airway.  At the very least, this apnea is what keeps her up some nights for hours, falling asleep and waking with a gasp or a struggle, over and over again.

6-30 close up

Well, that's not all of it, but I think that's enough.  The difficulty swallowing, the apnea, the g-tube feedings, difficulty moving and seeing and not smiling - all of it is due to her brain damage.  It's so frustrating that conventional, insurance-covered medicine has n.o.t.h.i.n.g. to help her brain, the root of all her challenges. 

In the last month I have entered action mode.  I am researching and reading about possible therapies for her brain, contacting experts from Toronto to California, scheduling out the next few months of travel for Anat Baniel Method (ABM) neuromovement therapies and more.  We are trying homeopathy, craniosacral therapy, essential oils, laser therapy, reflex integration and who knows what else.  Some of these modalities are well studied, such as laser therapy, others are more experimental, but rather affordable.  All of them are non-invasive and completely safe.  If it can't hurt and it's not expensive, we're going to try it now as much as we're able. We figure if it doesn't help her when she's so young and malleable, then it probably wouldn't help her when she's five.  I guess I'm also thinking to get some of this out of my system.  If I don't I'll always wonder, what if...?

Thank you for asking last time how you can help.  I have set up a fundraiser for Eleni's medical expenses at YouCaring.com.  I really hate when I feel pressured or guilted or in any way emotionally manipulated to give money, so I'm going to do my darndest to share without any of that.  Thanks for the benefit of the doubt.

Ok, I also want to update you on how baby's ABM lessons are going and what progress Eleni has made through the two lesson intensives she had in June.  Since this post is getting so long, I'll include all that info in a post mid-July.  We're headed to Chicago for a week early July for ABM lessons with one of the best practioners in the country.  I'm hoping for great things!  Oh, and we're staying with a quilty friend in Chicago, which saves a ton of money.  Thanks, Stephanie!  If anyone happens to have a spare room in Gainsville, FL; Chicago (west loop) or Asheville, NC and would like to host us, let me know!

xo,

Rachel





61 comments:

  1. I want to help. The link to,the fundraiser seems to not be working. I'm getting a run time error.When you have a moment would you send it to me in email? I can't imagine your stress and distress but I deeply admire your attitude and energy. Your story and Eleni are beautiful.

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  2. Thank you for sharing Eleni's journey with us. I love the photos (especially that first one where you can appreciate her gorgeous blue eyes!). She is beautiful. I also applaud your energy and positivity in trying everything you can...and I am sharing your hope for Eleni's continued development (and a smile just for you!). xo

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  3. Thank you for sharing - Eleni, you and your family remain in my prayers

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  4. Thanks for a very honest and heartfelt update on Eleni’s health and progress. I hope any of the therapies you have in mind will help your little girl in some way or another. So wonderful you can stay with a quilt friend while in Chicago! I’m keeping my fingers crossed for all of you. You are a brave woman and mother!

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  5. It is hard to believe Eleni is already 4-months old! I am looking forward to hearing more about her progress. Thank you for sharing her story. You are doing such an admirable job. I have great hope for Eleni, you and your family.

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  6. Please don't feel that you are only sharing the negative. I feel that your posts about Eleni are anything but negative. You show your amazing fortitude and positivity with each post. She is blessed to have you as her mama. Just donated and shared the link on FB. It is nice to be able to help in this very small way.

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  7. Prayers are with her and your family, I am so glad for the photos and the update. I didn't want to ask you how things were. The "You Care" website will be helpful.

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  8. I love when you share. I don't think you need to worry about being negative at all. I wonder about Eleni and you all the time. I'm sure all of your readers do. If you ever have any therapies in Texas, you are more than welcome to stay here. We would LOVE to have you! I'm heading over to make a donation. It is a joy and privileged to be able to help, even if it is only in a small way. xxoo

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  9. Bernie, you are so right. I couldn't say it better. Rachel, both you and Eleni are blessings to us all and your strength and devotion are so incredibly inspiring. A donation has been happily given.

    If Eleni ever needs treatment at the Penn State Hershey Medical Center in Pennsylvania, my home is your home.

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  10. Cue the refrain from the 80's song "That's What Friends Are For" even blog friends (google it). The good times, the bad times.... People care about your journey. It is a path that is difficult, but if your sharing of your thoughts and some small part of your feelings with us may allow for a little less stress to you many of us will gladly read and say a prayer for your new challenges. People are not expected to do it all alone, we are a community to help one another.

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  11. You know Rachal, Eleni's story is so very beautiful. Heart wrenching, yet beautiful. I know that sharing is probably helping others with similar stories. I do enjoy reading about her, even if it's not all positive, just as much as I enjoy reading your quilty stories. We are all here for you and your family, giving emotional support, cheering Eleni on. How are the big kids doing with it all? Many prayers.

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  12. Dearest Rachel, please share whatever you need to here. We are listening and here for you! A big big hug to all of you!

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  13. I believe there is something in her apnea, she is fighting it by gasping, she knows what she needs to do. Perhaps that is your smile until her muscles are stronger and can make her mouth and eyes smile? I also think her natural tendency to the right is a clue in itself or perhaps I am deluded and clutching at straws in an effort to help you fight some comfort?! Coconut oil is supposed to be a super brain food, has had success with dementia patients I think I have read somewhere. She's too little for it now but it might be something to add to your endless research. I am sure you will get lots of advice from a lot of people. I wish you and Eleni all the best.

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  14. Thank you so many times for sharing. You remind me how precious life is and how much for granted we take the simplist things our bodies are able to do. I will keep Eleni, all of her family, and the new doctors she'll meet soon in my prayers. When I see the side shot of you holding Eleni and looking at her I see the enormous love you have for her. May God bless all of you as you move forward day by day.

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  15. Dear Rachel your courage, determination and love are inspirational to me. Thank you for sharing your journey .

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  16. You have learned so much. Who ever knew you would be in this place in life? I am thankful for your momma being here for you. All of your family and friends.
    Life is full of what ifs.
    Thank you for sharing all that you have learned. So much has changed, for the very best really, since I went to nursing school. Yes Eleni is still so small and everything needs to be given to her that could help her. I am hopeful.
    I live in northern Virginia, loudoun county near WVa. If you are ever in DC, Hubbs and I have a big house, lots of room, lots of bathrooms. My only rule is don't let the kitties out ever!
    Other than that, do what you need to do. Get the right car insurance and you can drive our Saab where ever you need to go.
    Well, all of you remain in my prayers. Eleni does know her mama. She needs you. Isn't she lucky. I think so. I am glad you share the good and that not so encouraging. We are holding all of you up. Always.

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  17. Thank you for sharing the good with the bad, your honesty really is appreciated. Your perseverance is truly admirable; in goofball terms, you are a true rockstar!

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  18. Thanks for sharing an update on Eleni.

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  19. I'll add South Eastern PA/Northern Delaware to the list of where you could crash if needed - we have a tiny house, but could definitely find a place for you to stay. We've got CHOP in Philly and Nemours in Wilmington plus lots of research going on at all of the unis in the area. Eleni is beautiful and blessed with an amazing mother to go through this journey with her.

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  20. Thank you for sharing your update on her- the good and the bad! Keep courageously going forward! She's such a beautiful little girl!

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  21. Bravo!! You're allowing Eleni's voice to come through yours. As a mom, you are her best advocate. Are you involved with Early Intervention which is a free program for all families with children who have difficulties? Remember to also take care of yourself. She needs you to be strong and healthy in addition to being wise. Look for the little things. I used to do the developmental screenings for children birth to age 3 and gave some suggestions for tummy time and increasing movements. Have you tried rolling a hand towel or small blanket and putting it under her chest with her arms over the top when she is lying on her tummy on the floor? This helps to keep her arms ahead and gives some support for her chest area which usually a boppy pillow is too high for. Have you tried helping her move by laying her on a square blanket (should have lots of those) and pulling up one corner and using your other hand to guide her body over so she won't let her head flop on the floor always holding onto the blanket and then going back the other direction? Roll one direction several times before going back the other way.

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  22. Rachel - I love reading your updates, good and bad. Eleni is so adorable, love the pictures! They put a huge smile on my face. I know this is a struggle and you are doing so well! My dear friend has a child with what is called Angelman's Syndrome. However, she was not diagnosed until at least 7 or 8. She is 14 now. I was in the delivery room when she was born. Anyhow this syndrome prevented her from eating and many of the other things you go through. We didn't know if she would ever sit up or walk or any of that. She did start walking at around 8. So there is always hope and you never know when you will catch a smile from your sweet little girl. If you ever need a place and you are in sacramento, I have plenty of room! As always, my prayers are with you and your family!

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  23. Rachel, you're welcome to stay with our family in Gainesville. You can see more about me on my FB page. My husband and I are praying for Eleni.

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  24. I love reading everything you write. Eleni is wonderful and I too love to see the photos that you post of her. Thank you so much for sharing her with your blog readers.

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  25. Else I is beautiful Rachel and you're doing great, 1 day at a time. Thank you for sharing the reality of your life it's a privilege to have a glimpse of it x

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  26. Eleni was autocorrected to Else I! My apologies!!

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  27. Quisiera hacerte sentir mi apoyo y compañía desde España. Siempre que abro tus correos espero encontrar noticias acerca de ti y de Eleni, así es que escribe cuando sientas necesidad de compartir, porque siempre habrá alguien esperando para leerte y para mandarte buenas vibraciones. No dejes a un lado el contacto piel con piel entre Eleni y su familia, es de gran ayuda para "conocerse" mejor. Perdona que te escriba en español, pero me expreso mejor en mi lengua materna, y quería transmitirte exactamente lo que siento. Un abrazo para ambas, y mucha energía positiva para toda tu familia. fuerza y fe!

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  28. My thoughts and prayers are with you always. Thank you for the update on beautiful Eleni.

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  29. blessings to you and your family....
    here's wishing you success!

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  30. It's lovely to have an update on Eleni's progress. It's great that you are sharing the negative side as well as the positive side, I'm sure it will be helpful for other families going through the same challenges. Thinking of you all xx

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  31. I too can not get the link to open to give you hand can you we post or email me at dlbafamily@reagan.com..Thank you and God bless you and your family.

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  32. I am always eager to hear your updates on Eleni and your family. They say that happiness shared is multiplled, and grief shared is divided, and I hope your blog does that for you. You have been thrust into a world few of us know, and we admire your courage and passion as you chart your course and care for your family. Thanks for the donation opportunity. Our prayers continue.

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  33. Thanks for sharing Rachel. Looking forward to meeting you and Eleni next week. :)

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  34. Oh, how the story of your sweet Eleni has touched my heart! Thank you for the update and beautiful pictures.

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  35. Thank you for the updates on Eleni. Please share away with the negatives. We all experience negatives in our motherhood journey, they should be shared. How else can we truly support each other?

    If you ever need a room in Indy email me.

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  36. My heart and prayers continually reach your way ~ ~ I wish I could send you a fresh batch of energy and endurance, accompanied with wisdom and insight, and always, miracles. We can only truly care for each other when we know the truth, the hard truths especially. Thank you for trusting us with your precious Eleni and your heart.

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  37. We want to know the whole story so we an pray for specific needs! If you need a place in Arizona you are welcome at my house!

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  38. Thanks for sharing Eleni's progress with all of us. It is great that you get in action and learn what you can do for her, in addition to hugs, kisses and lots of love.

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  39. Thank for sharing more of your family's story and for giving us a way to help.

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  40. Oh Rachel, what a sweet baby you have. I am new to your blog and found it via your quilty posts. When I saw the new post on your sweet Eleni, I had to look back to your previous posts and get caught up on her story. My daughter had a severe birth defect that kept her in the NICU for her first 91 days. By many prayers and a few miracles, she is now a completely typical 3 year old, but I totally get the heartbreak and fear of those first few months of having a "sick" baby. I just wanted to give a shout-out to cranial-sacral therapy (since you mentioned it in your post). If it's available in your area, it's definitely worth checking out. It looks like voodoo when it's happening, but I would swear by it as far as how it helped Bonnie learn to eat and vocalize. I'm in the medical field (developmental pediatrics), so I was really skeptical at first, but now I'm a believer :)
    We live about an hour away from Asheville, NC (in Greenville, SC). If that helps at all, we would be honored to host you guys.
    Many prayers for your beautiful Eleni. I am specifically praying that she gives you a smile sometime soon.

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  41. Thanks for sharing this about Eleni. She is part of your life so I think it is totally okay if you write about it here. Don't worry, if people don't want to read it then they don't, as simple as that. I admire you writing about her and sharing it with your readers. I'm also impressed by all the comments, so many nice and helpful people! Wishing you and your family all the best,
    Groetjes
    Annemieke

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  42. OUR PRAYERS FOR EACH OF YOU ♥
    msstitcher1214@gmail.com

    PS That's what Friends are for ♥

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  43. Such a touching story. We are all thinking of you. I am in Michigan, about 1/2 an hour away from University of Michigan Hospital. We would gladly host you if you ever have any need out our way. Warm wishes and long hugs.

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  44. rachel, thank you for sharing your beautiful daughter and your story with us. don't ever hesitate to share whenever you need. if you ever find yourself in my area and need a place to stay my door will always be open to you. i wish there was more i could do. i will keep you in my heart and prayers. all the best to all of you.

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  45. I appreciate the power of sharing. Thank you for sharing with us so we can try our best to be there for you, if only with prayers or positive energy across the miles. (I'm in the Seattle area. I know there's a lot of brain research at the University of Washington. If that ever comes up in your search for support or therapies, let me know and we can help out with housing or such.)

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  46. Rachel, you have an amazing way of sharing Eleni's story that is always so well balanced and truthful. Eleni is very fortunate to have you. xx

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  47. Thank you for sharing the wins and the losses. I so love the photo of you too together. Suddenly I could imagine her in your home, and what it must be like for your family. Please know there's someone over here praying for you daily. For strength, for travel blessings, for smiles, for more wins. xxx

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  48. Eleni is such a beautiful child and you have such a touching way of sharing your grief and your hope as well as your strength. So many people would just 'give up' and Eleni is so fortunate to have you fighting for her. Your posts are not negative; they are real, honest, and heartfelt and it really shines through.

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  49. Thank you for sharing Eleni's journey. I'm praying for all of you. I enjoy the updates.

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  50. keep posting, keep writing, keep sharing the good and the bad and the human...xxxooo

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  51. Dear Rachel, I have been following your blog for over 2 years now and read with great sorrow about Eleni's condition. I have read and heard great things about the Deveny-method (Dévény Special Manual Technique & Gymnastics Method), the only thing is, I am not sure wether it's available in the US. Worth checking out though. Warm wishes to you and your family, Kata

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  52. Thank you for sharing. Good and bad but above all honest. I wish you and your family all the best and will keep you in my prayers.

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  53. I love to see photos of Eleni and how big she is growing. What a beautiful little girl you have. Hugs to you both.

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  54. Your story touches my heart every time you share. What a precious and lucky little girl. If you ever have to come to Indianapolis for Riley Hospital or any other services, I have two guest rooms and would love to offer my support. I am a lifelong special educator and admire the way you are journeying through this challenge and amazing adventure. Linda

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  55. It is a privilege to have you share so honestly your journey with your beautiful daughter. You're absolutely right in trying everything, it can't hurt and maybe one or a combination of all will help with her development. A few years ago, a study showed that young brains have better recovery chances even though the brain heals slowly. My prayers are with you and we've a spare room near Portland, Oregon, should you need it!

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  56. You are doing what any momma would do, fight for your daughter. With pain comes joy, with hurt comes hope. You are sharing truth and life~ no apologies are needed. xoxo

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  57. thank you for sharing your lovely photos of precious baby Eleni. Our best wishes are coming all the way from the Yukon...I believe in the power of prayer, from coast to coast! and then some

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  58. Thank you for sharing the bad with the good. That's the way it is and that is the way your days are and will be for a while and I really admire you for your courage to talk about it!
    Apart from everything else, please make sure you get your rest as well, though I know it's hard to rest with so many worries on your mind. It's a long and very rocky road and there will always be some pain involved. Maybe some oxygen support might not be a bad thing at night, I'm sure you already have a monitor for her 02 level? It might give her and you a little bit more sleep. Plus, it's not necessarily a thing she'll need forever. She is still developing.
    The one thing I wish for your family and Eleni above everything, is that she will eventually learn to smile, no matter how long it takes her. So even though I am not a religious person, this is what I pray for.
    If she can make some eye contact sometimes, even if there are days between, there is hope that she can build on that and that she will learn to control her impulse via her her visual or at least her hearing ability. Oh, it takes sooo much patience... :(

    I love the pictures with the blue fabric. Her eyes and her face are so beautiful! I love her little chubby arms and legs :)
    All the best and lots of good news and developments with your ABM lessons.

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  59. Thank you so much for sharing the good and the bad. Eleni is beautiful and loved the world over and I hope that you'll get the funds you need to give her the best possible start in life. <3

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  60. You are lovely and kind to share so much of your and Eleni's journey with us. I just want to say that if your search for treatment finds you in Toronto, my home is yours if you need a place to stay. You are in my prayers. :)

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