(I posted this note on facebook tonight, and thought I would post it on here also, just to get it out there as much as possible.)
We have decided to have a group fast for our sweet little Elinor this Sunday (August 7th). We love this little girl so much and think it appropriate to have anyone that is interested, come together and fast and pray in her name. She is currently going through testing right now and we are anxious to find out what these tests will tell us. Getting a diagnosis is proving to be a long road, and we are really hoping to get answers- we are getting to kind of a critical time in this process (different directions to go, etc.)
If you don't fast (or even know what that is) and would still like to participate, we invite you to say a prayer in her name that day. Even if you don't pray and would like to participate, you could meditate or send thoughts and good vibes her way. We are spiritual people and believe in the power of a group of people sending prayers and energy in the name of someone they care about.
We couldn't adore this little girl more, and we feel so lucky and humbled to have been chosen to be her parents. We are prepared to be at peace and accept whatever life is going to hold for her. We also know that the Lord says that we need to ask, so that is what we are doing. We ask that Elinor may reach her full potential in this life and be the best she can be. That she has the opportunity to shine and teach us what she is here to teach us. That her little mind and body can work together to accomplish great things. As her mother, I feel a peace when I am with her, that makes me want to hold and cuddle her forever to maintain that feeling. I want that to last our whole lives. As her teacher, I need to know the things I need to teach her and the persistence and the fortitude to do it. I need to understand her and listen to what she needs me to know. That Scout may be blessed with the continued maturity to be the big sister Elle needs her to be. It is these things we are praying for, including a miracle (if that is in store for her), for we believe in those too.
We know that whatever happens, things will work out how they are supposed to, we have a lot of faith in that. Thanks for your time and support, and thank you for loving our little E, I know she is pretty easy to love, but it still fills my heart when I see the evidence of the love from those around her. It means a lot to me.
I am attaching all the comments from the facebook note here (I wanted them on my blog where I can see them instead of buried on a facebook note). It also became kind of the place where I posted a few updates from Elle's doctor.
I also included the original pictures on the note (when I pasted the note to my blog, I was on the notebook- so didn't have access to all the pics on my pc. Turns out, you can copy and paste pictures right from facebook notes to blogger. I'll have to file that away as useful information for the future.)
Susan Wright Rydman, Amy Zussy Modracek, Erin CampoBasso and 5 others like this.
Rachel Hill Count me in- I believe in the power if prayer, and especially the power of fasting! And whenever I have held your daughter, I feel a great peace and a deep level of spiritual communication with her- she is more than meets the eye! Love to you and your sweet girls!!!August 3 at 12:55am ·
Wendy Johnson Roberts Our thoughts will be with you. With a loving Mom like you, and a loving family both immediate and extended, I know she already has a miracle. She could not ask for a better situation for getting the support she needs. She will do very well!August 3 at 1:51am ·
Benedicte Chung I'll join in prayer from across the Atlantic on Sunday. E just looks PERFECT, and so loveable as you say...and also so much like Scout! I love your note, as always. a truly wonderful and super strong Mum you are xxxAugust 3 at 4:35am ·
Rachel Kelley Conditt Your girls are beautiful, Emily and so is your heart. I will definitely say some prayers!August 3 at 6:39am ·
Beth Croasdaile Adorable pictures! Your girls have amazing eyes and hearts! I'll be praying for you all.August 3 at 7:02am ·
Megan Scott Richardson thank you so much for giving us this opportunity to help!! love to you all!August 3 at 8:32am ·
Amy Wright Phister Love and prayers, as always, from us. Your strength, attitude, and love is truly inspiring, Em. We love your family so much.August 3 at 9:48am ·
Erin CampoBasso Many prayers headed your way!! Thinking of you all and sending lots of love xoAugust 3 at 10:00am ·
Emily Wright Pugh I am amazed at the outpouring of love and support! Thanks so much everyone, bless you all.August 3 at 12:21pm ·
Laura Chatterton Chaffin We are here for you all the way from the West Coast! Anything in the world you need you let us know.August 3 at 1:07pm ·
Jeanine Walton I am sending you love and prayers! Please call me if u need to talk medical stuff! Love u guys!August 3 at 11:00pm ·
Lorri Hubbard Wotherspoon The Wotherspoons are in and sending love and good wishes from T-town.Thursday at 8:12pm ·- Emily Wright Pugh Colin Farrell was on David Letterman tonight and talked pretty extensively about his son with Angelman's Syndrome. Pretty cool! Kind of wish that Colin Farrell wasn't the celebrity that has a son with the same condition they think my daughter has. That means I have to dislike him less. (He did a quick imitation of h is son that look remarkably like Elinor! It was really funny.)Thursday at 11:16pm ·
- Jeanine Walton Wow Em, Angelman's! When will u know for sure? There is varying degrees so I know she will get best care and has the greatest parents and family. I will totally be there for you and my resources at my hospital:-)Thursday at 11:33pm ·
- Emily Wright PughI'm not sure- she had a simple Angleman's test (that detects like 80% of the cases) and it was negative. Then he did some other test that we thought was a complete gene sequence, but it must not have been because what ever test he just did, that came back as normal. We got the test results from the lab, so they had no information except the actual result, so Rob called Dr. Carey and left a message. He called back the next day while Rob was in the shower (ARG!) so he left a message and explained that he recommends a complete gene sequence now, and is going to talk to her neurologist about doing an MRI too. That was two days ago and he said he would try calling again to explain more fully and we haven't heard from him yet.Friday at 12:18pm ·
- Emily Wright Pugh Rett is the only other thing he seems to be even considering right now. Angelman's fits much better to all of us though.Friday at 12:19pm ·
Jennifer Peddy Berg Oh my.....lil E looks so much like younger Scout...and they both look so much like you. Beauties!! I will definitely send some positive thoughts to lil E. Stay strong sweetie - you are an amazing mom to an amazing little girl.Friday at 8:00pm ·- Emily Wright PughDr. Carey called today and it looks like we will be scheduling an MRI for her on Monday. I am also grudgingly giving the possibility of her having Rett more weight. She definitely doesn't have classic Rett if she does have it, it would be a variation. Also, she has had two different Angelman tests as of now- one that catches 70% of the cases and one that catches 80% of the cases. If she has Angelmans at this point, it would be a mild case. After the MRI, and depending on the findings, we will be doing a complete gene sequence on the genes that affect Angelman's and Rett. We were also reminded a few times that we still may not have a diagnosis after all this is done. So that is the update. Kind of unsettled, but doing ok. We went to a pool party this evening and Elle had a fabulous time splashing around, she absolutely loved it. It was a nice end to a uncharacteristically grumpy day for her.Friday at 10:25pm ·
- Benedicte Chung Em - this is really unsettling and you are dealing with it remarkably well. I have just looked up the 2 syndromes - I really hope you get more certainty and a diagnosis soon. In the meatime, prayers tomorrow, MRI on Monday, and lots of strength to you and Rob. Thinking of you lots, Love you xxxxYesterday at 3:29am ·
Susan Wright RydmanWe are in for the fast/prayers thing Em. Cam's family is also in. Lot's of love and support going out to you this weekend. I am so impressed with how strong you and Rob are in dealing with this. I The thing I'm going to focus on most this weekend, is just getting a firm diagnosis. Whatever that diagnosis is, we can move on from there. Ellse is such a sweet, wonderful, loving, beautiful little girl, we are all lucky to have her in our lives. I can't wait to go to the new Muppet movie with her in November. We are going to take her, right?18 hours ago ·
3 comments:
I came across your blog and I don't even know you, but I will pray for Elinor. I really enjoy reading your blog, I hope to come back again. My name is Malinda and I live in Cedar City. Check my blog out if you like. I hope you have a wonderful Sunday Emily. :)
I've only just seen this post, best of luck to you are your darling daughter. I might be a little late but I'll say a prayer for her
Family and friends supporting us in this means a lot to me, but there is something about the kindness and support from strangers that is a different kind of special that is very touching. Thank you.
Glad you enjoyed reading my blog Malinda and I hope you do come back, and I will check your blog out too. (and no Kate_face, you are not too late, you are right in the thick of it!)
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