Friday, August 28, 2015

Eleni, 6 months

Today Eleni is 6 months old.  This morning I was a swirling pot of anger, resentment, despair; but, sitting down and letting some out helped some.  If you don't need to hear that gritty stuff, skip down to the Progress and please read about some special Fundraising News there at the end!

Eleni, 6 months

Eleni, 6 months

This month baby is photographed on Mustang Rose Border available at Jones & Vandermeer!  I've had my eye on this fabric for a long time.  It's as lovely in person as I imagined!

The CPAP machine finally came this week, nearly 3 months since I originally brought Eleni's apnea to the pediatrician's attention.  Maddeningly, we were advised by the respiratory therapists that brought the machine that it would be wise to have another study done before using it very much.  It seems her doctor may have been cutting some corners, and without more testing we won't know if the machine is helping or hurting her.  I am just so angry about the whole situation.  This is breathing we are talking about, people.  Breathing.  It's kind of important.  Now I'm waiting again, unsure whether to use the CPAP or not, unsure when the tests might be scheduled, always unsure.

Eleni, 6 months
using midline

We're also waiting on an occupational therapist (since end of May) and waiting on a nutritionist (just got on that list, since baby is getting older and still can't take any food by mouth), waiting on an official vision diagnosis so that baby can start getting some help there too.  On Tuesday we see a neurologist who will read Eleni's follow-up MRI and tell us what he thinks is likely possible for her.  The following week, on my birthday, she will see the developmental pediatrician so we can hear just how far behind she is.  These are our realities, so there's nothing to do but face them.  I knew that 6 months was going to be hard.  And here it is.

I hate that she is six months old.  I wish we could put time on pause, so that she could heal and then resume life as a more-typical baby.  A baby that smiles or laughs or babbles or can hold her head up.  The kind of baby that you can take to the park or to church.  I really do think she'll eventually be able to do some of those things, but she may not be a baby then.  I do try to enjoy her now just the way she is.  So much easier said than done.

Just this morning I asked Aria to clear the suction machine.  It's a machine we use to suck secretions out of her airway so that she doesn't choke or aspirate them all, given that she can't swallow.  After using the machine, we clear the line with some water to keep things clean.  Liam's done this lots of times, so I assumed Aria had too.  Turns out no.  She used so much water to clear the line that she flooded the filter.  No matter, I have two back up filters.  But... oh, they gave us the wrong kind and these won't work and the machine can't work at all without them and baby sounds like she's trying to breathe underwater and she has a low grade fever and whoops, we're late for our walk with our friends.  Tally ho.  Be sure to enjoy that walk!  Right.

Ok, official end of rant.

the Progress

Let's talk about progress.  What's been good this month?

First off, we tried a new Anat Baniel Method practitioner by the name of Josie Davenport in Florida.  She was great!  Mom and I loved the way she treated Eleni like a little person: talking to her, giving her the benefit of the doubt regarding intentional movement, praising her for what she can do already and even holding her when she was fussy to soothe her.  Eleni and Josie have a sweet connection.

I found myself letting go and relaxing on that trip.  It felt so unusual, so foreign.  Definitely refreshing for all of us.

This month...
  • Eleni's apnea and breathing remain hugely improved.  
  • Picking up her head independently a good 4 inches from the ground during tummy time.  She can't hold it up, but she picks it up and drops it down many times each day.  I know she'll get stronger with all that practice.
  • Picking up her legs often, so much so that I was finally able to get some photos!  Occasionally she holds them up.  We'd love to see a kick.  

  • Closer to independent rolling.  Eleni's learned to twist through her chest better, swing her arms up and bring her head forward to assist with rolling.  She also pushes with her feet and gets a good deal of momentum.  Truly, I don't think she'd be nearly this far without ABM.  The therapy really helps her find her muscles.  It seems like she'll figure rolling out sometime soon...
Eleni, 6 months
she makes a face and winds up before giving her best effort!

  • In fact, she's rolled over a few times this month, all by herself, when in a position with leverage or momentum, such as rolling out of my lap.  We're getting there!
  • Left hand is often held softly, instead of fisted.  Brandon recently got the hang of working on her hands and says that can be "his thing."  Loved to hear that.
Eleni, 6 months
softer left hand

  • Many things that started last month are getting more clear or frequent, such as: sound startle, fussing when suctioned or being lowered into her bath, face responsive to touch.
  • Holding head properly about 25% of the time, when held with lots of trunk support.  Yes, the spinning is translating to every day life!
  • Continuing to be more alert and also to consolidate her sleep into longer naps.  Some 1+ hour naps happening this month.

Fundraising News!

As we've raised money for Eleni's continued progress through Anat Baniel Method (ABM) therapy, I've been thinking about the other little ones out there who do not have the opportunities that my baby has.  We are so fortunate to be known and loved by you all!  I'm so glad to share that I've arranged for Eleni's fundraiser to also help other children as well.  Let me tell you how!

Eleni, 6 months

Do you know what got us really going with ABM?  Eleni was given a small grant for lessons in May/June from Access to ABM, a small non-profit that gives grants to children through practitioners across the country.  Our nearest practitioner in Asheville chose to extend her 2015 grant to Eleni, based on need.  The grant partially covered the cost of lessons so that we could feel responsible committing to three sessions spread out over about 7 weeks.  By the time we had used up the grant, it was completely clear to us (and her current physical therapist) that ABM was helping Eleni far more than regular physical therapy.  Thus, we were motivated to raise funds to keep her going.

I am pleased to announce that an anonymous donor has volunteered to give matching funds to Access to ABM, so that other children will be able to experience the healing and hope we've found in this therapy.  They've agreed to match at 10% of the amount raised for Eleni in our YouCaring Fundraiser, up to $2000.  Our goal amount is $20,000, so if that goal is reached, the donor will give $2000 to Access to ABM!  That amount would fund grants for two children to try ABM therapy in 2016.

Eleni's YouCaring Fundraiser "Breathe, Move, Eat, See" will conclude on September 1st.  All monies raised via the fundraiser still go directly and exclusively to Eleni's therapy expenses.  Monies are collected without any YouCaring fees and delivered regardless of whether our goal amount is reached or not.  We are about $5000 shy of our goal, but I'm not stressing about that.  No way.  I am thankful.  Everyone has already been so generous.  May you be blessed as you have been a blessing!

with Love,

Rachel

Eleni, 6 months

Note:  Access to ABM, founded by Marcy Lindheimer, is a division of Butterfly Educational Arts, Inc. and is tax exempt under Section 501(C)(3) of the U.S. Internal Revenue Code.  All contributions are fully tax deductible and 100% of all monies go exclusively to ABM lessons for special needs children.  Contributions may be mailed to Marcy Lindheimer at 2109 Broadway Apt 9-93, New York, NY 10023-2148, and made payable to Butterfly Educational Arts, Inc.

Butterfly Educational Arts is a very small operation dedicated to education.  Access to ABM is a project within the nonprofit.  All operating costs are volunteered or paid for by at the founder's expense so that 100% of Access to ABM monies go directly to lessons grants for children.

42 comments:

  1. Why are you ending the fundraiser for Eleni? I can't send much at one time, but was planning on sending some money every month. Others may be able to help you this way too.

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    1. Thank you. That's so kind ! But, well, I just felt odd keeping it open. It's such an awkward thing. I was thinking that when we use up the larger portion of what's been raised I will address the need again then?

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  2. Rooting for Team Eleni! Hang in there, and take it a step at a time. I'm glad to hear you are finally getting therapies in place.

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  3. Wow! I can see her progress in the photos (holding her head straight and her hands look more relaxed). She really must be working hard. :) It sounds like day-to-day really has its ups and downs and I feel for you in your frustration with the doctors. I hope that you're able to get some of medical equipment issues figured out soon. I just keep thinking, even when you share the difficulties, that when Eleni is older all of help you've given her as a little baby will matter so much to her. You're a good mom!

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  4. Yes. This is where we are going to send our yearly contribution this year. We usually pick three or four charities each year, not this year. I am so absolutely thrilled with Eleni's progress, and it is great and very hopeful to see these pictures you shared.
    Eleni may be a little behind, but this ABM is waking up and stimulating all of those things that a baby with no brain injury has to work out on their own. I am so happy to see her trying.
    I know it is hard for you Rachel. I know you feel the biggest burden on yourself. Aria will learn, mistakes will be made, I am so glad that daddy found a specific area to focus on Eleni, there will always be bottlenecks with medical people, tests, supplies etc.
    I know exactly how you feel, taking care of my mom and dad. It is so much, often too much. Be sure you take good care of yourself. I tend to eat poorly and lose weight, so I have to plan, so I do not eat garbage all day. (really I do that, and then I am full and not interested in good food) That is from being tired. I also grind my teeth at night now.... I could go on and on, but I am "old" so just take care of yourself.
    I am thrilled at her progress though.
    Your idea to help raise funds and assist others is very thoughtful. Now you are in this place, and there will be others just as overwhelmed and confused as all of you were.
    If you are ever in Washington DC, we are 35 miles west in Loudoun County. Hopefully you won't ever have to come out here, this whole area is a mob scene. Even out in the boonies where we live
    All of you, especially you, my dear, are in my prayers, constantly.

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    1. Your notes are always lovely, Rosemary. It is especially nice to hear that Access to ABM will be in your plans this year. It's founder, Marcy, is the practitioner we saw in July who helped Eleni so very, very much. Her heart is really for the kids, and her simple, straightforward charity reflects that.

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  5. I use a CPAP every night, and my machine has a small SD card, the same as the ones used in cameras, etc. that card records the data from my usage. From that data, my doctor knows if the machine's pressures are adequate for therapy. Look on the back of the machine (near the top) to see if there is a card or a card slot. Search the specific machine online for an owners manual.

    Check out this forum and ask questions about pediatric usage: http://www.apneaboard.com/forums/

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    1. Thanks! I'll check out that forum. Our machine does have a card that they can even download info from remotely. The concern is that her apnea has changed so much since her sleep study in early July so we don't really have a baseline. Plus, it is typical to do a sleep study WITH the cpap before using it at home so that they can try out the settings with full monitoring so as not to increase central apnea. Aparently, CPAP can increase central apnea if the settings aren't carefully set....

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  6. Wow, Rachel, she is making some amazing progress. I could see it in the picture of you holding her in your last post, too. Accept that you are going to get frustrated sometimes and remember the squeaky wheel. Nothing is ever as important as our own, and she's very lucky to have you for a mom, advocating for her. Congratulations on getting so close to your fundraising goal and for being the impetus to helping other children, too.

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  7. From a mother who's been there, done that, keep on believing. We were told that our son (foster son at the time) would be unlikely to live to be a year old, would most likely never get off supplemental oxygen, would likely be multiply handicapped if he lived, and on and on. We chose to believe he would be able to do whatever he wanted and did everything in our power to help him reach his goals. He didn't give up, so neither did we. He's now 27 years old, has held the same job for 7 years, has an apartment with a roommate and staff, participates year round in Special Olympics, bowls on a regular bowling league and softball league, and is very happy. Yes he is Intelligence Impaired, but he is smarter than some people I run into on a daily basis. Go one day at a time, but keep your eye on the future. You can do it and so can she. Cdahlgren at live dot com

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    1. What a nice life he does have! Thanks for sharing your story.

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  8. I also wish there was a way to keep it open so that we could continue to help as we can. Maybe even some way to sponsor her - monthly, bimonthly, or one time gifts. Or a way for us to donate items like we did for the auction.....
    Because its definitely making a difference.

    You have every right to be upset and rant because it is very serious. My husband is a respiratory therapist so I understand the importance of having the right respiratory care.

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  9. We do not seem to know life until we really need things. We are a privileged lot. My husband died in April of ALS...always a healthy athlete. He had a breathing machine, a suction machine, a feeding tube, He could no longer roll over and he had beautiful blue eyes.
    He was 70 yrs..old. Eleni is 6 months and new. My husband was at the end of his life, Eleni is at the beginning. Because we are used to doing well, I have been horrified to find out that in the past 5 months what others go through. Our social security has been held up. No income. I am raising my three young grandchildren alone with no income??? His pension kicked in just last week. Social Security told me that they service 60 million people and I am just one of them..Really? Grief is compounded by lack of control...the realization that indeed it can happen to us and all the control we thought we had was an illusion...yet we can do small things with great love that can make a difference. You are making a difference. LIfe is unfair. It was just never unfair to us before. You are making a difference and you are sharing it with others who can find comfort in your survival. Accepting life on life's terms is a tough nut to crack.

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  10. I wish I could reach through the internet and hug you. You are an incredible human being. I check my Feedly every day in the hopes that I will see a post from you about Eleni. Her six month photos show so much progress it is just incredible and you are probably so close to the situation emotionally that you can't see what we all see through your photos. Eleni's beauty is slowly blossoming and it is all because of you and your unwillingness to accept the status quo.

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  11. Yep. We need to keep it open! Or just a paypal account we can donate to at least. It will be a couple months before I can send my portion to her!

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  12. You're a beautiful woman, Rachel, inside & out! Love that last picture of Eleni, she looks pretty relaxed right there! Rant at us, anytime you want!

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  13. I never know what to say except want to let you know that I'm listening. Wish I could give Eleni a cuddle, your new therapist sounds lovely. I hope things get sorted with the health system for you, its so crap that on top of everything it feels like you're not being looked after, I second the opinion to make noise and get heard but it is hard when that is naturally against your nature. Sending prayers of strength your way xx

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  14. I would be way more worried about you if you didn't rant. It can be so difficult to manage the medical system. I am so happy the ABM is working so well for Eleni. There is definitely progress and that is wonderful. I hope your appointments focus on her progress and not what she can't do yet. Prayers, hugs and thoughts for you all.

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  15. If she had been born to different parents, Eleni's progress - and prognosis could be very different. She has an amazing family behind her, and helping her. I really respect people who love unconditionally so much that they will put forth an amount of effort and commitment that not everyone would be able - or willing - to. Wow. Of course there will be hard moments, and wonderful moments. Keep exploring the elements and the limits of the path you are traveling and be confident that you are traveling it in the best way you can!

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  16. Prayers, hugs and strength to you all. Kisses for sweet Eleni!

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  17. I love the updates and agree with everyone else that ranting is perfectly acceptable and expected!! It means you are aware and are actively participating in your emotions and not observing your life.....you and your family are doing your best and it is exactly enough xxxxxxx

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  18. Rachel, are you able to change your YouCare settings to accept Paypal?
    I'm so happy to hear about all the progress Eleni has made!

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  19. I love your updates. I think you should at least keep your donation site open until you reach your goal. I too can only donate a little at a time. Then when that is depleted you can open it again. It is my charity of choice because I know who I am helping. I love that there will also be a grant for someone else to experience what appears to be an awesome therapy.

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  20. my heart breaks that you, as a family, are going through such a hard time both physically and emotionally. i pray for you all to have the strength needed. she is a beautiful child.

    and a huge congratulations on all the progress she has made. keep site of the good.

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  21. Rachel,
    I love hearing of Eleni's progress! So much so that I am taking my 7-month old to see Marcy in Chicago for his first ABM sessions next month. I would love to hear of any other ABM practioners that you would recommend as Luke had a partially developed cerebellum and many of the same difficulties as Eleni.
    Since our kiddos are roughly the same age and I also have 2 older children, I feel many of the same emotions you do. I can't always put words to them ad you do, but I agree with them 100%. It helps to know that I am not alone on this journey. Thank you for pouring your heart out and being so honest.
    Samantha

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    1. Oh, I am SO glad you're going to see Marcy. Samantha, we should definitely be in touch! I can't email you, as your blogger profile does not have an email address. Try reaching me through the connect button in the sidebar on the right, or leave a comment with your email address.

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  22. Rachel,
    She is so cute and looking more like her mum every day. Hugs to you all:))
    Lois

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  23. Oh Rachel, I cried when you wrote that Brandon said it could be his 'thing'. I have been praying that in all this you could somehow feel *more* family rather than less.
    I've had in mind Eleni's 6 month 'birthday' and I'm so glad you've shared the hard, frustrating things too.
    Much love to you! xx

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  24. Please don't close your fundraiser. There are so many of us willing to give. I'm so sorry that your energy has to go into fighting the bureaucracy when you need the energy to give to Liam, Ana and Eleni, not to mention to take care of you. It is so exhausting and is so unfair. Please know you are in our prayers.

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  25. Oh, I felt for you when you talked about stopping time. I feel this at my son's birthday every year. He has autism and I hate that another year passes without him "catching up". The thing is he is a gift just the way he is and so is Eleni. I am a much better person because of my son. He has opened my heart to see the beauty in places I never saw it before. I have compassion about things that I used to judge. All life is precious. I bet Eleni's little life has affected lots of people already who would never have really payed much attention if she had been more "typical". Praying for you and your family! The grief and fear are normal. At least it was the same for me. 😊.

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  26. I wanted to let you know that I've been unable to make a payment through the linked website. I've tried several times in the past couple of days, but just get an error message. I went to the FAQ page on the site, but I don't really see anything to help figure out why. Maybe I'm just entering the info wrong? I'll keep trying, but thought there might be others who are having trouble and would hate to have you not meet your goal because of technical difficulties!

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    1. Thanks, Amelia. I don't know what could be wrong. So sorry! I haven't heard that it's not working for others, so it's possible it's something with your connection? Perhaps that computer doesn't think the site is safe? I wonder if you try from a different computer? Thanks for letting me know. I'll keep my ears out for any other similar situations.

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    2. I ended up using my husband's card and had no problem. I guess it was just a strange fluke with my card. I'm glad I was able to contribute!

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  27. She's working so hard and making good progress!!! I totally can see it in the photos! She's holding her legs up! That's is amazing. My heart aches for you and your family as you adjust to this uncertainty about what the future holds, and you continue to be in my thoughts and prayers, Rachel. You are a great mama and you are doing everything you can for your sweet baby!!

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  28. I love reading these months updates on Eleni. She is making such good progress. Thanks for sharing your heart. It must be so difficult to care for Eleni's needs, her therapy exercises, and caring for your family. You are a brave woman. All of this time you are investing is paying off. So thankful for this course you are setting that gives such hope to other mothers of babies with trauma at such a young age.

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  29. I love reading these months updates on Eleni. She is making such good progress. Thanks for sharing your heart. It must be so difficult to care for Eleni's needs, her therapy exercises, and caring for your family. You are a brave woman. All of this time you are investing is paying off. So thankful for this course you are setting that gives such hope to other mothers of babies with trauma at such a young age.

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  30. Hi Rachel,
    I too have had a problem connecting. When I click on the donate button, nothing happens. I tried several times in the month of August and nothing happened. Is the link still open? If not, how can I donate? I would like to donate the amount you need to reach your goal.
    PLEASE keep the site open, I personally don't think you should feel awkward about this - and many others seems to feel the same! This journey your family is on - filled with pain, hope, despair, frustration, joy, relief and fear - is one many of us are following closely - as you know- and even though we can't be there in person for help, hugs and time outs for you, your hubby and kids - THIS we can do - and as you can see - MANY, MANY of us want to assist in any way possible. And, please, please keep sharing your thoughts, feelings, progress and setbacks. You are NOT alone and we WILL listen with open hearts and continual prayers. If ever anyone deserved a supportive audience - it is YOU Rachel - look at all that Do.Good.Stitches has done for this world - how many lives have been touched by your dreams and actions. Hugs to you from California - Pamela
    P.S. could you use a donation of miles for plane tickets?

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    1. Oh, dear. It seems like many folks had trouble using the donation site. Perhaps YouCaring gets overloaded and has lots of down time? I know it wasn't working today because the fundraiser was supposed to be finished as of yesterday, September 1st. But many people have reported trouble using it in the last few weeks.

      I have extended the fundraiser through September 3rd to give those who had technical difficulty a chance to try again. If you can't get it through, feel free to contact me at racheleuphoria AT yahoo DOT com and I will arrange for another donation method. Any "offline" donation I can still input into the total YouCaring tally so that it counts towards the matching donation.

      I do need to allow this fundraiser to close since that is my commitment with the folks who offered to do the matching donation to Access for ABM. When the need arises again, I will let do another fundraiser, I promise. I would have put it off before, to be honest, but now I feel more comfortable letting you all know when the time comes. And there are not words to express my gratitude! I hope someday Eleni herself can express hers to you all.

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  31. My sister was born with CP 28 years ago. I love reading your posts and learning about all the new research and strategies they are using these days. Things have come so far. Just hold in there, it's a long and difficult road but it's worth it!

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  32. I so admire your fierce determination for Eleni! Thanks for keeping us updated on the good and the bad. I think of you often.

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  33. As hard as it is, keep on! Rant when you need to - it's a good thing. She's a beautiful little sweetie.

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  34. You mentioned this new doctor talked to Eleni as a little human and touched as such. I'm glad because while she has challenges she is human. It's awesome to see the changes in beautiful Eleni

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