Saturday, August 1, 2015

Eleni, 5 months

Alright, are you ready for another update?   This has been such an eventful month for us.  Eleni had two important tests, that wonderful trip to Chicago, another illness and a fantastic reaction to the simplest home therapy ever.  Here we go...

Eleni, 5 months

This month baby is photographed on Lucky Strikes Clothesline Flora available at The Intrepid Thread!  A mighty fine pick, if I do say so myself.  There's just nothing more lovely than a baby on pretty new fabric!

some Tests

Early July Eleni had a sleep study to diagnose the extent of her apnea.  During a sleep study, your child stays overnight in the hospital hooked up to a bajillian devices that monitor everything from the amount of carbon dioxide in her exhale to how loudly she snores. (And oh does she snore!  Ahem.)  The results showed she has apnea at almost 3 times the threshold for severe.  An apnea event is defined as longer than 10 seconds of not breathing or not breathing well enough.  Eleni had 27 apnea events on average per hour during her sleep study.  She had 81 events on average during deep sleep.  Poor baby!  And, no, she is not staying oxygenated well enough over all.

You would think with results like that they wouldn't let us leave the hospital without a CPAP (device that helps keep the airways open) for her to wear at night, when she's most at risk.  Unfortunately, getting help for her apnea has been slow as molasses.  We're still waiting on a CPAP, which is currently being held up by insurance/provider issues.  It was June 8th when I brought the apnea to my pediatrician's attention, and she observed an apnea event in the office.  Two months later she'll finally get help?  Really?

Good thing we weren't just counting on conventional medicine.  We started seeing an expert homeopath in June, who prescribed a remedy for apnea.  I have documented how Eleni's visible apnea decreased dramatically in relation to our use of that remedy.  Now that she's ran through the complete protocol, she doesn't need that remedy anymore.  Her apnea is about 70% better.  It doesn't wake her up from naps anymore or attack her during feeds.  Truly amazing!  It would be interesting to have another sleep study to confirm officially just how much she's improved! 

Meanwhile, we'll still take that CPAP, please.  Doctor?


Eleni also had a swallow study in July.  This time we did a FEES test, which is a study via camera rather than via x-ray.  It's SUCH a better test - safer, less stressful on the child and providing better information for a baby like Eleni, who has severe swallow disability.

The results?  Pretty discouraging.  On camera we could see that Eleni has "gross" aspiration of saliva on a regular basis.  Although she can swallow, her throat does not sense the need to swallow, allowing saliva to get into her lungs.  No doubt she's been this way since birth, underscoring her need for medications to control her secretion levels and to support her lung function.  She also aspirated some thin and thickened liquids during the study, making it clear that we cannot safely introduce food at this point.

Sad face.

Gosh, I wish they had ordered this test earlier!  It would have better equipped us to keep her well.  I actually specifically requested a FEES study, based on my research.  Giving myself lots of points for that.

Eleni, 5 months

and then a Cold

On the way home from Chicago my mom and I gave each other lots of worried looks.  Baby came down with another cold.  How would this effect her ability to retain her Chicago learning?  And how bad would it get this time?

But here's the thing - we made it!  We made it through our first illness without requiring hospitalization!!!

I believe it was a combo of decreased apnea (thanks to homeopathy), easier baseline breathing (thanks to ABM with Marcy) and my ability to use meds at home to support her health.  There was a 36-hour period where I was on high-alert, considering taking her in and watching her very, very closely.  But we made it.  And I am SO relieved.  I don't want to face an existence were every single illness means spending a week in the hospital.  It's exhausting for our whole family and so traumatic for baby.  I hope this can be our new normal.

the Simplest Thing

Ok, skeptics, please hold onto your hats.

Remember how we saw the optometrist in Chicago who specializes in vision recovery after brain injury?  She explained that Eleni's level of awareness was at a subcortical level, rather than conscious or subconscious, based on her eye tests.  Eleni feels where here body is in space, but does not use sight or hearing or smell to experience her environment.  Although that was technically bad news, I was glad to have someone confirm and further illuminate exactly what I had observed.

The doctor advised us to spin the baby v.e.r.y. s.l.o.w.l.y. in an office chair to "wake up her brain."  Haha.  I didn't even tell you about that when I shared about the Chicago trip earlier this month, because it sounds so bizarre.  But, hey, it's free, it's easy.  We can do that.  I'm game.

At the eye doctor's they did the spinning as part of the diagnosis process.  I held Eleni first flat on her back, then reclined and then sitting all the way upright.  In each position I revolved 4-5 times in one direction and then 4-5 times in the other direction.  In the office she showed a minimal appropriate response only going clockwise and lying flat on her back.  That's a response in 1 out of 6 positions.

We took up "spinning" duty twice a day while still in Chicago.  Just 3 days in she started making an appropriate eye response in all 6 positions.  Hmmm... should it change that fast?  The doctor had told me that the SLOW spinning provides vestibular input in small doses that Eleni can handle and reaches her where she already is, on a subcortical level.  She said I should look out for those eye changes during spinning, and then that she might become more aware of her environment in general and even start having longer awake periods and better sleep.

That all definitely sounded too good to be true.  But every bit of it is happening!

First we noticed that Eleni likes the spinning.  She generally doesn't fuss and her eyes show interest and awareness.  Then, a little over a week into this simple home therapy, I was spinning her in the upright position and noticed that she picked her head up off my chest and held it, as if by magic, in the correct position during all 5 revolutions in both directions.  Whhaaaaat?  It didn't even seem hard for her.  At all.  But when we stopped spinning, her head dropped back.

I have thought for some time that Eleni doesn't lack head control because of strength reasons, but because of balance issues.  Balance is a brain skill.  She doesn't know where her head belongs in space and will generally push her head way too far back when held upright.  Like this...

Eleni, 5 months

Now, during upright spinning, Eleni holds her head beautifully centered over her shoulders during some or all of the revolutions.  I pull my chest back away from her head so that she is holding it independently.  You can see her eyes are looking straight too.  Her chin is low, but I'm thinking that's normal when a baby is just gaining head control? 

Eleni, 5 months

While we spin, if she does turn her head to the side (which she usually does not), I notice her head stays level rather than pushing back.

Eleni, 5 months

When we stop, she loses that placement.  I have hope that with time that control will transfer to regular life for her.  And, in fact yesterday, I noticed her holding it correctly at a time independent from spinning as well!

We are spinning three times a day now.  During spinning she also sucks very often and startles to sound.  I believe it is bringing up her level of awareness just as the doctor anticipated.  She's even actively awake longer and taking better naps.  What's next?  The moon?  Haha.  Funny how the little things get so big in situations like these.

all the Progress

I can hardly believe all the progress we've made this month.  Thanks to homeopathy, ABM lessons, the spinning and even those prescription medications, things are looking up this July.

  • Hugely decreased apnea
  • Easier naps (due to above).  This made it realistic for baby to start sleeping in her crib or travel bed, rather than a soothing, rocking bassinet.
  • Intentional movement!  Baby is trying to roll over all the time.
  • Learning movement patterns.  She has learned some things that help her roll over, which she employs again and again.
  • Comfortable on her stomach.
  • Active head up from the floor.  She has minimal strength/control at this point, but she is now eager to work on head up after rolling to her stomach.  I can feel her engaging her muscles more as the days past, so that my hand is doing less of the work.
  • Easy at rest breathing.
  • Reduced overall spasticity.  Her muscles seem less tense over all of her body.   This kind of change will make it easier for her to learn to move.
  • More leg movements.  She picks up her knees intentionally and independently from each other when lying on her back.  Just yesterday she learned to play a game where I helped her touch her knee.   She seemed to become aware of hand/knee touching for the first time and repeatedly brought up her right knee (which is the less mobile one!) over and over again to touch her hand.  I held her hand in place to facilitate the touching.  
  • More relaxed hands/wrists.
  • Sucking now when she is awake!
  • Mouth more responsive to touch.
  • More aware and expressive of discomfort.  I have not been able to count on her to tell me if she's hurting.  She's starting to fuss when we deep suction her to clear her airways.
  • Head control while spinning.
  • Distinct sound startle while spinning.
  • Sometimes seems to use sight as well.
  • Actively awake for 30 minute periods on a regular basis.  Before Chicago, she would tire after 10-15 minutes of being awake.
Eleni, 5 months

Eleni, 5 months

Eleni, 5 months
I think you'll agree that our trip to Chicago was a huge win for Eleni.  Taking Anat Baniel Method (ABM) lessons with such an expert practitioner and seeing the eye doctor there who understands brain injury seem to have triggered an overall awakening of her brain.  I am so glad that we are planning a return trip to Chicago in September!  It will be exciting to get the doctor's feedback on how Eleni's awareness has changed.  And who knows what new tricks she might have.  If you want, dear doctor, we'll stand on our heads.

I know it gets repetitive, but I can't help but finish with a thanks to you all for being a part of Eleni's recovery.  Because Eleni's YouCaring fundraiser has done so well, we can plan repeat visits to see that expert ABM practitioner, getting Eleni the best help at this critical time of development.  What we've raised so far brings us through to November with her alternative ABM therapies.

Now with August here, we are starting up the new year in homeschool.  It's certainly a stretch.  But staying home as a family is what Aria and Liam still want, and what I want.  What I want is more of me.  I want to take care of Eleni.  I want to have time for my big kids.  I want to get to keep sewing and blogging.  I don't want replacements; I want it to be me.  I may not get what I want, but at least I know what I want.

I know you'll wish me luck and prayers.  Thanks for that!

You're the best!

xo,

Rachel


99 comments:

  1. Hi Rachel! My very first comment here, though I've been following you for many years now. I'm in awe with beautiful Eleni's progress. I didn't find ANY of the doc´s prescriptions to be weird or ridiculous, and who knew such simple tricks could make such a life-changer impacts on someone's life. Eleni's is the most adorable and CHUBBY baby girl I know. And I'm so very happy with her progress! That's sunny news on a cloudy day. Way to go Eleni! Rock the world!xxx

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  2. So happy to hear of Eleni's progress! (To balance the frustration of not getting all of the medical help you should!) There are so many things we don't understand about how the brain works- spinning sounds like it's really helping, so there is no reason to argue with success.

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  3. I love these updates and what wonderful news re: Eleni's continued growth. As a physical therapist who specializes in working with patients who have neurological delays or traumas (including adults with developmental delay), the spinning exercises makes TOTAL sense to me!! That whole proprioception thing and knowing where one is in space relative to their body is so important for everything else too...so I am so happy to see this working for her. And one more thing - huge kudos to you for being such a wonderful advocate for Eleni. I wish the medical community was much more responsive, but I see these kinds of delays in care so often that I know being a "squeaky wheel" is very, very important (if not downright exhausting). Remember to take care of YOU too. Big hugs to you and Eleni.

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    1. Yes, it is exhausting. Sometimes I can't help but be disappointed in myself for not squeaking more often to get her help faster, but I just can't keep on top of it all, of course. I am intrigued to hear the spinning makes sense to you. My speech therapist was also not at all shocked that the spinning is increasing her sucking. I guess I just wonder why no one else is recommending it! I wonder if people don't want to burden parents with all sorts of things to try? For me, that is the wrong approach. I'd rather try 50 things and have success with 2, than only be given 3 things to try and... Well, in those cases it's sad to say that no one is surprised when there is no success.

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  4. I am so happy for you. I believe we have become so accustomed to just "taking a pill" that we have cut off alternatives. Our brains are amazing structures and I think we are on the forefront of brain rehabilitation. Good for you in taking the initiative and fighting for your baby.

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  5. Such encouraging news..amazing. Yup and prayers and luck...you got it.

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  6. Such wonderful news about Eleni’s progress! You indeed know what you want and I can only hope for you that your wishes come true. Enjoy homeschooling your big kids again! You have a lot on your plate, but you are so positive, I’m sure you will manage!

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  7. HI, all in all>very good news! Our continued love +prayers for Eleni+all of you + the Medical people too! msstitcher1214@gmail.com

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  8. I'm so happy to hear that Eleni has been improving! Yay for persistence and fighting on your part, she is truly blessed to have a Momma who won't give up!

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  9. Rachel these are AWESOME leaps that have been made. I can only imagine how happy you are with what has happened. I will pray for continued steps and for a calm for your soul as I know you are very scared, exhausted and still probably angry. (I would be ) I praise you for all the effort you have put into Eleni. Because of your love ,effort and fighting for her betterment ,she will thrive.

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    1. Yes, still "scared, exhausted and angry" - that's true. So many feelings, so many important things to do! I do feel my heart is looking up this month though. It's a relief to see her come alive a bit with her awareness.

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  10. So happy for the improvements that make things better for Eleni.

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  11. Your strength and resilience is amazing. Sending so much positive thoughts!!

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  12. Oh Yay!!!! On each and every little simple(?) thing!!! Hugs to you and your family :)

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  13. I'm so happy to hear such positive developments!

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  14. You are such an amazing mom. Eleni is a lucky little girl to have you :) Thanks so much for the updates, I think of you and Eleni often. I am especially interested in the homeopathic treatment for the apnea? I have it (I cannot sleep on my back at ALL anymore), and my brother in law has it bad enough he almost died from it when he was in the hospital for a broken rib and collapsed lung. He has a bi-pap machine I think they call it. Anyhow, could you tell me more about the homeopathic treatment for it? Or point me to the right direction on the web?

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    1. Karin, It is the nature of homeopathic medicine that remedies are very individualized. For those with serious ailments, it's important to work with a homeopath practitioner who will want to consider your entire constitution and treat you as a whole person. We are working with Kate Birch of HippHealth.com, who specializes in children with neurological damage (usually from vaccine injury). Perhaps if you contact her she can point you in the right direction to find a homeopath for you. We work with Kate via skype, which seems to be working well! It's OK to work with someone who is not local, if necessary.

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    2. p.s. Although many doubt the efficacy of homeopathic medicine, it falls in the realm of complete safe (cannot possibly hurt you) and rather affordable, considering the alternatives. I don't presume to think it will work for everyone (but what does?). It seems worth a try. Good luck!

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  15. This is awesome news! I'm so glad you have a homeopath as well. Best wishes to you all!

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  16. Thank you for sharing your good news. Small steps make a big difference in the end and Eleni is so lucky to have such a strong, supportive family. Beautiful photos too!

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  17. Your heart must leap with each and every improvement she makes! Such wonderful progress.

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  18. Well, now, I have goose bumps all the way down to my toes. I am so thankful for these updates. XO

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  19. I feel such joy and hope for little Eleni! May she continue to improve in such amazing ways!

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  20. Your story is so full of hope and thankfulness in every little victory. I admire you more than you cn know. I've also been involved with a special needs child, but not nearly on the level you are going through. My heart and prayers are with you and your family, and just seeing the joy you take in each bit of progress is so inspirational. Cheers to you!! And continued improvement for this precious child.

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  21. I love hearing how much Eleni is learning and growing each month. So thankful for the drs in Chicago and for all of your hard work with her.

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    1. Yes, yay for the specialists in Chicago! And for Stephanie who lets us stay with her. Such a blessing they are all!

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  22. Rachel, Eleni even looks much more lucid!!!! Oh my goodness. Keeeeep spinning.
    I have a lot of faith and confidence in the ABM. The more I read, the more I wonder why
    this is not a more widespread therapy.
    I am thrilled to tears for all of you. Eleni is beautiful. I love that she is awake and even sucking. So good!! I am really happy to hear that her apnea is under control too. Just wowie! She is a doll!

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    1. I think she does look better, especially with her head in the right spot during spinning. Head placement does speak volumes. And, most importantly, I think she is feeling better/feeling more. When a baby is non-responsive, it's almost like they're not present at all. So glad to see her being more "alive."

      I too wonder why ABM is not a more widespread therapy. I think it is a marketing/insurance/timing problem. Such a tragedy for all the children who would benefit.

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    2. I work as a medical device designer, so I can tell you that our medical insurance system can be very slow-moving! Typically the big insurance companies will follow Medicare's lead when it comes to choosing which therapies, devices, and surgeries will be reimbursed.
      Treatments and devices that are just one step better than current practice are much easier to get approved by both the FDA and by Medicare. You can point to what is already going on and say "See? That works and we are even better." Treatments that use a whole new approach end up needing much more evidence of safety and efficacy. While it's good that we require companies to rigorously prove that their treatments work, collecting that evidence ethically is quite expensive!
      ABM sounds like it is a therapy that works, but doesn't have the financial situation necessary to get reimbursement going anytime soon. Many insurance companies are only recently beginning to cover chiropractic care! So, I don't know if that helps at all to have a little more detail.

      I have been so impressed by your fortitude in the face of this challenge. The depth of worry that I have about my own little one (who seems to be developing normally) make everything that I previously experienced seem like nothing. I can't even imagine your stress and worry. It must be such a relief to see some progress, some interaction.
      And I can really see Eleni's progress, even in the photos! I am so glad to hear that she is doing well with her head control and having periods where she seems more responsive. Oh my goodness, and awake time is doubling? That is major!! Twice as much life to experience and learn.

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  23. Amazing news. I am so happy for you.

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  24. I feel that Eleni's on her way to becoming a very active little girl, fully normal in all ways. She just has to learn so much more than a baby born without brain injury. God gave you this gift and will help you help her regain full use of her brain. You are an awesome mother, and so many others are learning through you and eleni that there is so much that can be done to awaken a brain. You are on a mission and we're all behind you and praying for your strength and Eleni's full healing.

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  25. That was such a lovely post with lots of positive news. I love how you share dear sweet little Eleni with us. She is adorable. Keep up the great work - what a great mum you are. Hugs

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  26. Hello there - I subscribe to your blog and love reading the updates about Elena - just wanted to mention a therapy in our paper this Saturday from an episode of Australia's 60 minutes - about a Chad Timmerman from Adelaide who works with Therasuits which are used in therapy with cerebral palsy - kinda biomechanical exoskeleton with rubber bungy cords which correct or challenge a childs motor control. It sounded very interesting for when Elena is older - it was mentioned as a NZ child Honor had gone over there from NZ and they were looking for sponsorship for her to have a follow-up treatment. Maybe it is something that could be tucked away in your file for the future.
    Blessings
    Karen

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    1. Thanks! Yes, we've heard of Therasuit. It is something to keep in mind, like you said.

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  27. Brains are so amazing! So glad you're seeing progress. Keeping you and your lovely family in my thoughts.

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  28. Wow! You can really see in those pictures of the spinning just how much progress Eleni is making. Keep on trying all those new things - they really seem to be working. And I'm betting that all of those prayers for Eleni are doing wonders behind the scenes. xo

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  29. Eleni is beautiful, and I'm glad she is making progress!

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  30. I love reading about Eleni's progress and the therapies that you are using. A few months ago I heard this doctor on BBC radio and the interview has stayed with me since and he has written this book http://www.amazon.co.uk/The-Brains-Way-Healing-Discoveries/dp/1846144248/ref=pd_bxgy_14_img_y. I thought of this whilst reading this post. :)

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    1. Oh, yes! That is my favorite book so far! It includes two chapters that discuss the "parent" to ABM therapy. It has other things we're looking into as well. Love to Normon Doidge!

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  31. Hallo, I'm from Belgium en want to write in nederlands so i can say it right...
    I hope you can translate...
    Rachel....ik vind je een fantastische moeder en je energie is zo enorm...
    Super voor Eleni...je prachtig mooi kindje.
    Ik lees julie relaas al sinds het begin en als mama van 2 autikinderen kan ik alleen maar zeggen...
    Doe zo verder en hou je vast aan de goede dingen...
    Blijf moed en hoop houden en tijd doet veel...
    Sommige dingen kunnen veel beter worden met tijd...ook al is de prognose niet zo goed...
    Hoop...
    Mutch love...

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  32. Thanks for the updat! You're such a great mom the way you fight for your little girl and that you try everything to make her life a better. It's amazing that such a small thing as spinning makes such a huge difference for her but then which kid doesn't love to spin? Wishing you all the best!

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  33. This is such a wonderful update. I remember the last time you wrote - about your trip to Chicago - I was so overwhelmed and just did not know how to process all of that. And I was thinking about how awesomely brave you were for Eleni.
    Here's to persistence, determination, loads of luck and a whole bunch of prayers!
    Also do hug the rest of your family for me. It must be very tough for all of you.

    p.s. Trying 50 things and having a few succeed is the way to go!

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    1. Yes, it has been a busy month to process! We are having a 3.5 week lull in therapy right now, which partially has me itching for more and partially has me appreciating the time to gather myself, as much as I'm able. I need to hug them all more. And I need those hugs! Thanks

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  34. Thank you for taking the time to write this update. I'm here for these insights as much as the beautiful quilting.

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  35. Eleni and your whole family are lucky to have you. I have only had a small taste of a health scare in one of my babies and know the toll the hyper-vigilance I had took so much strength (although I never, ever would have done less). The strength you have is incredible!

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  36. Thank you for the update. Your family is always in my thoughts and prayers.

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  37. Wow that is amazing progress! Still sending thoughts and prayers for continued progress on this journey!

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  38. Reading your comments makes me convinced that you are the perfect mother for Eleni. You are so observant and such a good advocate for her needs. I wish you the strength and energy to find the "more" of you that you wish for!

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  39. What a wonderful news. You are taking such a good care of Eleni and still taking little snippets of time for sewing which I think is great! I'm sure it helps you to still feel like you in the midst of all this Hugs!

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    1. Thanks, Mari! It does. I need to keep sewing or I'll feel so much more lost in all this.

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  40. This is such a tremendous improvement for all of you. Eleni is lucky to have a family that is so proactive and strong. You and she will have so many battles in the future but you are doing such a great job. Wish I could give you a big hug.

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  41. How lucky is Eleni to have you for her mother!

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  42. wonderful news! I am so happy for you all. I will continue to pray for all of you. :)

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  43. Yey!! Keep going/fighting/smiling/loving/dreaming/researching and spinning! Wonderful news! Take care of you too!

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  44. This is wonderful news. The photos of Eleni, and especially of you and Eleni, are just gorgeous. And you're right, it is amazing the gains you have made from small steps. I'm glad homeopathy helped the apnea - it is incredible what a good homeopath can do. We have been practicing homeopathy in my family for more than 20 years with great results.

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  45. We know diddly squat about the brain, and every new thing we learn matters. The proprioceptive input makes perfect sense to me. I know it's a hard journey, and it's thrilling to see new positives in her progress. In the midst of seeking all the help for Eleni and implementing as much as you can, be sure to find adequate time to be kind to yourself too. It's thrilling to see her progress.

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    1. These comments are some "kind time for me", really they are! Thanks to all of you for that!

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  46. Yay, for the simple things....like spinning!
    I'm so happy to hear her progress. She is she a beauty!

    You may remember that we also homeschool. I prefer the term home education because education does not have to look like school. There are times when all we focus on are the three Rs and that's perfectly ok. We also do studies year round because that works best for us (for a number of reasons I won't take the time to list now). It's ok to adjust your homeschool to fit your family's needs right now. What worked last year may not work this year and that's ok. Family comes first, education is just a part of our lifestyle. Reading, being curious, creative, and growing is a part of our everyday and so education is always happening.

    I'm praying for you Rachel, and your family.

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  47. Look at all those bullet points! Yahoo! Praying for continued progress.

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  48. Such wonderful (and big!!!) progress, Rachel! The changes are quite visible -- even to those of us who have never met her! Keep learning and keep advocating! (And don't forget to sneak some "me" and "big kid" time, too!)

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  49. So happy to read of Eleni's improvements. I think this post can help others too, you have given important information and hope to many.

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    1. Thanks for reminding me that these types of posts can help others. I've accepted that helping other parents whose babies are seriously brain-injured is going to be part of my story now. Not sure yet how that will play out, but these posts are a start.

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  50. I love to read about all Eleni's new achievements and how your hard work in her therapy is helping her so much - keep spinning and sharing photo's :)

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  51. It is so exciting seeing her progress. I am a pediatric P.T. and really nothing you are trying is that "weird". Proprioceptive and vestibular input is very important. I have been exposed to ABM and can see how powerful it can be. Not to confuse you and please I'm not telling you what to do, but you might want to explore http://masgutovamethod.com/about-us/the-mnri-team. I've taken some courses in MNRI and feel it fits well with ABM. I've had some courses in this method and have seen and felt on myself some nice results. I gain nothing by recommending this, just my heart has been telling me to share it with you. My best wishes to you and your family.

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    1. Yes, we are interested in MNRI! We will see an ABM therapist this month who also does MNRI, which should be a nice introduction to it. Reflexes are so key for children with brain injuries. Wish you were our PT!

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    2. Thank you for your kind words. How exciting that you are seeing an ABM therapist who also does MNRI! That will be a wonderful introduction for you.

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  52. Fantastic Rachel - whatever Eleni's potential is, I am sure you will awaken it. The spinning makes sense and how wonderful that it's so easy and costs nothing. I'm very skeptical about homeopathy but as you say it can't hurt, and in your position I'd be trying everything, too. The improvement in apnea is surely a massive step forward that will help everything else too. And well done on surviving a baby illness at home! Another milestone for your family. Thanks for continuing to share.

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  53. Definitely sending you luck and prayers. All that you are doing is just amazing.

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  54. How amazing!!! So many people doing great things to help others including you!! Just like your quilting advice helps quilters, I can totally see all your info helping others in the future!! Rock on Rachel aka SuperMom!!

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  55. Rachel, I love these updates about Eleni! It is amazing to hear of her progress, and so fascinating to learn about therapies that are available to her. The spinning is such a simple thing, but with so much incredible potential. So glad you could see someone who recommended it to you! My prayers for Eleni when you first shared about her birth were that she would astound her doctors...well, she seems to be heading in that direction, which is wonderful! Thanks for sharing her story. I will continue to pray for her, for you and for the rest of the family.

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  56. I constantly marvel at how the simple things in life can have such an impact on us ... keep going Eleni, you're doing great kiddo :) Now, if only I could invent a cloning machine for all the mum's out there ...

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  57. It's great to see Eleni's progress! Thank you for sharing. Continued hugs and prayers...

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  58. Hola Rachel. Me alegro tanto de los progresos de Eleni que no tengo palabras para expresarlas . Es muy grande todo lo que estas haciendo y deseando que siga progresando. Un fuerte abrazo a ti y a toda la familia.

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  59. Oh Rachel. Eleni is incredibly lucky to have you for a mother.

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  60. Thank you for continuing to open your heart to us, Rachel. I know the loving thoughts and good wishes for you, Eleni and your family flow from each and every one of us.

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  61. So happy to hear of Eleni's progress. My thoughts and prayers are always with you and your dear family and for the right people to be there at the right time to help Eleni with her journey. You are an inspiring woman.

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  62. Wow. If you had even listed a quarter of the progress you did for Eleni this month I would have been excited for you! Even in still photos you can see amazing change. Yay Eleni!

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  63. I just looked back at your Eleni post from when she was 3 months old. In that post she was asleep in every single photo (including in the bath) -- so much growth and progress in 2 months. I'm glad she is staying awake more and hope you are feeling encouraged. I do think of you and your family often. If prayers and good energy from a community of people has any power to make a difference, surely you and Eleni will feel it, for you have an enormous amount of good will and prayers coming your way! I hope you and the whole family keep doing well, especially as the school year starts up.

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  64. Isn't is such an incredible blessing that you don't have a career outside the home? I could not stop thinking about this while I read your post. Home based mothers are so very important! I am not bashing on mothers who work outside the home at all. I taught school after my children were in school but would rather have stayed home. It is hard to afford a family on one salary. I just realize what a huge blessing it is for Eleni that you are home for her 24/7. It isn't easy for you but it wouldn't be any easier at all if you worked outside the home either. I'm so thrilled about her progress! Keep on spinning!

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    1. True story! Today as I was working with Eleni, I though about how important it is that she gets daily intentional/informed movement work with me. I am no ABM practitioner, but the little bits of good movement work I do with her every day will be key to her success. Thank God I get to be home! That is one reason why I keep plugging along here. Stitched in Color is a legitimate part of our necessary income.

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  65. Oh my gosh!! Fantastic! I am so happy for you and for Eleni. I think and pray for you all the time. Sending more love your way!!

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  66. Eleni is SO blessed to have a mother like you. You are not standing still, taking the easy road, just letting your challenges determine where your baby will be. You are doing something, anything to help her. And you are starting to reap the rewards. I know it probably seems like a lifetime already, but 5 months really isn't that long in the grand scope of things and look how much you've discovered and how far you have come in this time. Keep at it and God continue to bless you!

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  67. Such wonderful news this month-I am so happy for you and your family!

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  68. I love getting these updates on Eleni! I'm so happy to hear of her progress and to know that God continues to open doors for you in her care. She is such a beautiful little girl!

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  69. So good news in this post. I'm so happy for you, Eleni and your family that there are so many possibilities and good results. What and how you write is also so easy and interesting to read, my compliments on this too.
    Hope next month will be as good or better then this one;)
    Groetjes
    Annemieke

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  70. So pleased to read of this month's progress :) Eleni is blessed to have such a strong advocate for her mother! Onwards and upwards x

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  71. Rachel as I read this it runs through my mind {yet again} that God carefully chose you to be Eleni's mom - no doubt about it. As you ebb and flow in the discovery of family dynamics I will be praying that God will show you what to hold on to and what to let go, remove desire for things that may not be possible, refresh, renew, and excite you for what lies ahead! Blessing my friend :o)

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  73. I hope Eleni is getting better. Hopefully she can grow better in the future. Amen.

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  74. I am amazed at your determination to help your child! You are a wonderful mother. I hope she continues to make such great strides. Your family is in my prayes! You deserve all the blessings for your strength and love!

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  75. What an incredible first summer for Eleni! How wonderful and exciting for you to see such leaps right now : )

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  76. What an incredible first summer for Eleni! How wonderful and exciting for you to see such leaps right now : )

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  77. What an incredible first summer for Eleni! How wonderful and exciting for you to see such leaps right now : )

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  78. Rejoicing with you! Thank you for sharing! God bless!

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  79. I've been following your blog for several years, and have been keeping up on Eleni's progress with such hope for her, I am so happy to see all this progress happening so quickly. My baby girl is a few months older and I hope you know there are many of us out here reading, not necessarily always posting, but keeping you and your family in our prayers for an abundance of support for Eleni...I hope she can feel it and give her strength to keep making great strides forward :)

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  80. Just had to pop in and say how excited I was to read about Eleni's progress. I'm a huge believer in alternative therapies as I've seen what they've done in my own life. I found myself smiling and saying, "oh wow!!" out loud several times during this post. I'm in awe of you and Eleni! I will pray that you are able to find ways to remain at home with Eleni; and of course, I will be praying for her continued healing.

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  81. Amazing how the brain works and something as "simple" as spinning can make a difference. Thanks for the update!

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  82. Such a beautiful baby. Enjoy and celebrate each of these improvements! It may be a different path than you had with your other kids, but you and they will all be the richer for it.
    From one special needs mom to another.

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  83. Your update made me cry from happiness! I'm so glad to hear of Eleni's improvements.

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