Wednesday, September 25, 2013
Elinor!
Also- I've really been wanting to get back into blogging and have some great blogs in my head I could write, so stay tuned, I just might.
Tuesday, August 7, 2012
Tuesday, March 27, 2012
Solved
Friday, October 21, 2011
Lollipops and Crisps
Thursday, September 8, 2011
Just Like Heaven
I have no doubt in my mind that Elinor is going to be one of my greatest teachers. I like how she said person instead of mother, because I feel that Elinor is here not just to make me the mother I need to be to my two girls, but the person I need to be to come even close to reaching my potential.
I think Elle is going to (if I let her), change me in ways I needed to be changed. What better motivation could I have to be the best person I can be, then to have this shining example of goodness and such a beautiful spirit in my own home? I am not the person I should be, I make mistakes every day and wrong choices. I don't do all that I should be doing. But I want to do better, Elinor more then anything I have ever come across in my life, makes me want to do better. It gives me pause and makes me feel so humbled that Heavenly Father trusted me to raise one of His special spirits. I only hope I can endeavor to live a life that makes me deserving of her, and raise her to make my Heavenly Father proud. I bet she was hard to let go of, maybe that's why it took so long to get her here.
Untitled from Emily Pugh on Vimeo.
I hope you all like it and can get a glimpse of the joy we feel living every day with this beautiful girl.
Saturday, August 20, 2011
Wednesday, August 3, 2011
A fast for the little little
(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 ·
Tuesday, May 17, 2011
When you have a minute (or 13)
Friday, April 15, 2011
Another clue??
Yesterday she took a late nap and it was a kind of chilly day and after she was sleeping I bundled her up real good with her big soft blanket cause it just seemed like a cozy thing to do. About 45 minutes later she woke up crying really, really hard and was really upset. I went up there and her little body felt very warm and she was inconsolable. I turned on Sesame Street and held her in my lap. After about 3-5 minutes she calmed down and was fine. My wheels started turning and I started thinking about other times in the past when this has happened and I had actually thought to myself, "she really does not like to be hot" and it wakes her up sometimes, and she is really upset and I have put it together in my mind a few times that the reason for her fussing is that she was too hot. I didn't know why or think much about the fact that it upset her so much.
So, when I remembered reading about sensitivity to heat, that's when I realized it didn't say anything about water, just heat. So I further googled and found out some interesting things. Some kids with Angelman's have a sensitivity to being hot and from research they have done, they have discovered that it doesn't have anything to do with core temperature or mess with it, they sweat properly, so they can cool their own bodies down like any other person, it seems to be connected with the nerve endings of the skin. Angelman's has many symptoms relating to neurological problems, so they think that this is related, and it is just a weird sensation thing to the skin surface.
Upon further contemplation, I wonder if this is why she has never cared for blankets on her legs, wasn't that enthused about being swaddled back in the day, it may explain some of the middle of the night wake ups when she wakes up very upset and I don't know why (this really isn't often, but out of character to her mild ways). I am a little nervous as to what this may mean for summer time and park/zoo visits and the like, but I didn't notice anything out of doors last year, so that's encouraging. It may not be a huge problem. I wonder if even being hot outside, natural cooling works fine, as opposed to being wrapped up in blankets and not being able to break free. Who knows, but this is definitely something to watch and keep in mind for the present and future, especially because I am relatively sure it actually causes her pain. One of the many adventures that await us, I'm sure!
Wednesday, March 30, 2011
Mommy Guessed Wrong...

I put her down for her nap today, and when I went upstairs about 45 minutes later I heard her gabbing away, laughing and kicking her crib bars. I wondered- has she even slept? I let her carry on for another 20 minutes and then plucked her out and let her play with her basket of toys until her appointment with one of her therapists. By the time the therapist came, I had forgotten all about the nap incident, but she did get fussy. I got her her favorite cereal to snack (Pops), and she munched on them happily through the appointment. About the last 10 minutes she would have bursts of sadness and I attributed it to just snacking when she wants something substantial like a sandwich. So when Aly left, I put her in her chair and while I made her sandwich she was still fussy, which I attributed to being impatient being in her chair with no food. I gave her her sandwich and left for a few minutes and didn't hear a peep out of her. When I popped my head in, I found out why:

Mommy guessed wrong.
I should have known, I know. But I really wasn't certain she hadn't slept, just guessed that it was a possibility she didn't.
I like how she still made an effort to eat some sandwich (and to gather as much of it as she could to hug while she slept.) When I picked her up, she didn't even open her eyes, but did manage to finish chewing up what was in there and swallow it.
Wednesday, March 23, 2011
Haircut Follies
I made the dubious choice on Saturday night to trim Elle's hair. I was so done with her hair being in her eyes I made the rash choice to do it myself.Disclaimer:
I have never claimed to have any idea what I am doing when it comes to cutting hair.
Infant hair is no exception.
Poor little thing has no idea what she is in for.
Still happy-(Doesn't know enough that mommy is about to butcher her poor little hair.)
Before
After.Yeah, I made every cliche mistake in the book (Hmmm.
Let me just even it up a little over here. Oops.)
Mommy is sorry Elles, but you're still the cutest little thing on the block.And it isn't that bad if I brush it a certain way.
I'm actually pretty proud of the back.But I was wondering if Scout is too old to blame on a secret game of barber shop?
Rob said that it isn't nice to blame that on Scout.


















