This morning (early, like 7), I am lying in bed, woken up by Scout playing pretty loudly in her room. This is what I hear:
(shaky sheep/goat voice): "Earthquake!!!!!"
then in some other more regular voices: "earthquake!" "Ahhhhhhhhhhhhhhhhh" "oh no!" "But I paid my taxes!"
Rob and I started giggling at the goat voice (until then didn't know the other was awake), but when we heard the tax line we about died laughing. We think got that line from "the boy who cried wolf" done by the Muppets on a video the girls watched all week, two weeks ago. It was just quite random to hear. We love listening to her when she doesn't know she has an audience.
Then later today:
Scout was trying to put a videotape* into our tv in the livingroom (it's tricky, there was a tape already in there and it doesn't eject properly).
"mom! It's not working!" (trying to shove a tape in, in the wrong direction)
"Well, you have to take the other one out first"(ejecting tape for her)
(Scout, trying to put the tape in -still turned around-)
"you need to turn it around"
(turning tape around and trying to shove it in again, but at a slight angle, so it still doesn't work) "See! It doesn't work!"
"You need to put it in straight" (me, demonstrating the correct way and the tape slides right in)
"How come you know everything?"
(deciding to accept that)"because I am smart and I'm old"
"You don't know everything- how many muscles are in an elephant's trunk?"
"I don't know, how many?"
"4,000 muscles"
(put in my place) "Wow, I didn't know that"
*Yes, I know "Videotapes", but we have one built into our living room tv and we discovered that our library has a much bigger collection of kid's movies on videocassette then they do on DVD. (especially Muppet movies which they both are totally into right now). LAY OFF!
Elle's has starting trying to scoot a little bit while sitting (let me emphasize "a little bit"), she was scooting while sitting on the couch and I moved her back a few times, but while in the other room a few minutes later I get the shout from Scout that Elle fell off the couch and that I better hurry. I didn't hear any crying I expected to hear, and walked into this scene. She caught herself and then just continued watching tv, calm as can be. SO Elles. (Yes, she had just had her diaper changed and was waiting for mom to get her some clothes and out of her dunglees if you were wondering).
2 Cute church stories:
A few weeks ago, Rob had her on his lap and she was looking through a sesame street board book. Rob leaned over to me and told me that she was kissing all the pictures of cookie monster. I watched her for a while and sure enough! When she'd turn the page she would zero in on cookie and give him kisses. It was so sweet, she loves her Cookie so much. (Kisses are a consistent thing we have been able to get Elle to do on demand and also unsolicited. When she has a stuffed animal, you can frequently see her leaning over and giving it kisses over and over.)
Last week, Elle didn't get a nap in before church (we go at 1). She was super tired (started rubbing her eyes at 9 that morning!) It came time for nursery and we debated whether to take her or not and we ended up deciding to just try it. We told the leaders she was super tired and if she got fussy to just bring her in to us. I was filling in teaching a primary class and Rob was just doing his normal thing and when re joined up at the end of church, I saw that Rob had a sleeping Elle in his arms. I asked when they brought her to him and he said they didn't and that at some point they looked at her, thought she looked so tired and just laid her on the floor with her blanket and she conked right out. I just laughed at the thought of Elles just sleeping right on the floor in the midst of the mayhem that is nursery. Only our girl!
Here is the new thing her physical therapist is having us do:
I love her little left hand in this pic. It's the classic left hand pose she holds when it doesn't want to participate in what the right hand is doing)
It's helping her balance (she tends to spread her legs out really wide when she sits and they want her to be able to balance without that maneuver so we have to turn her into a little mermaid for a while each day. She is so amazing. This would probably make most kids so annoyed and mad. Not our Elles. It doesn't even phase her. She just does her best to balance, topples over now and then, and continues to play or watch tv or do her little Elinor things.
(Sorry for the quality, these were taken with my phone, I couldn't find the camera.)
Here is a little sample of Elle watching Sesame Street. This show makes her so happy! Yesterday she was on the couch and it was four minutes into one o'clock and I knew it was on, but didn't know if the tv was on the right channel. I walked into the room to make sure and the first thing I see is Elle with a giant grin on her face and I knew then that it must be on the right channel (it was turned down really low, and I couldn't hear it). I looked and sure enough, there was Elmo on the screen.
It is about time I did an official report on the Arcade Fire concert we attended. Of all people, our cousin Dan tipped us off early that Arcade Fire was coming to Orem in April (shout out to Dan, thanks dude) and we were very surprised they were coming at all, let alone to Orem instead of Salt Lake (but that's neither here nor there). Well, this was a definite NO MISS, so my sister Cat, my bro Matt and his wife B, and Rob and I all got tickets.
It turned out that Elinor's big appointment was the next morning (early! At nine and a little over an hour away). This distressed me at first, it seemed like really bad timing. It turned out to be awesome timing for a few reasons: 1. Matt and B would be around (staying at our house) and could watch Scout that morning so we could leave her home and she could go to school -then it turned out to be spring break- 2. There wasn't a better place for me to spend the night before the appointment then burning off steam with some of my favorite people in the world, watching one of my favorite bands in the world. That environment was much better then what I would have done- worried and stressed all night about what the next morning would bring.
(By the way, thanks to Grandpa and then Sarah for taking care of our kidlets)
We met at my house and left for dinner, had a quick sandwich and then headed for the venue (UVU). We had general admission, so were on the floor (we'd have it no other way). The concert was AWESOME! The playlist was so so good and the band was fantastic. Rob was very nervous about enjoying himself. He has grown into quite a fan, in fact The Suburbs is his favorite song at the moment, but he thought they would be awkward and full of themselves. He has seen them perform on SNL and Letterman and stuff and they have come off a little awkward there. I wasn't worried for me or him, I've seen videos of their regular concert gigs and they were energetic and fun. Turns, out they were even better then expected. Win was so cool and totally didn't take himself seriously at all. He also forgot the words to one of the songs (something from The Suburbs, I can't remember which (ready to start maybe or we used to wait). He was funny about it. Rob and I laughed when he took off a buttoned up shirt, only to have another buttoned up shirt (buttoned to the top) on underneath (he wasn't trying to be funny, but it was to us). Rob mentioned that he has "Adolf Hitler hair" on the way to the concert and we all laughed, but he had the last laugh when they came on stage and we all had to agree that his hair indeed, looks Hitler-ish. My favorite person to watch though was Win's brother Will on percussion. He was so all over the place and banging on anything he could, conducting if needed (or not needed, but doing it anyway). He was just really entertaining.Shot during Rococo
I had to get a picture of this creepy video they played during No Cars Go it was a loop of these women in water and it was really unsettling and made us giggle a bit.
Last song. I think that is Matt in the glasses. And possibly B's arm.
I did a special dance just for Rob during Sprawl "Mountains Beyond Mountains" (he was a few rows of people behind me at that point). I knew he'd see it and appreciate it. I went all out.
Anyway, it was a GREAT time and I am so glad we had the opportunity to go. Also, I can't mention Arcade Fire and Rob's reservations without mentioning this: since the beginning, when he hears "Wake up" he has thought of this video and song:
Don't ask me how he ever saw this video or why but maybe his reluctance and dislike for Wake Up makes some sense.
Here are some selections of songs from the concert (it has wake up on it if you are curious now)- I made the playlist this week on my family blog cause I won the movie trivia and I did this one (it includes a Thom Yorke song as a clue to the next movie so, that song was certainly not at the concert but you can't ever get enough Yorke):
One more funny thing as long as we are talking about Arcade Fire:
They surprisingly won Album of the Year at the Grammys and many people are unfamiliar with them and someone started a blog called "who is Arcade Fire?" which features really mad tweets (mostly) from people that had never heard of them and were upset that they won the award over such people as Katy Perry, Justin Beiber, and Eminem. It is funny but I must warn you that these people aren't the sharpest tools in the shed and besides the spelling atrocities they frequently use bad language in their gripes. Here is the site if you are interested.
Some highlights include:
1. "the fact that Arcade Fire is winning over people that have actually made an impact on the music industry is *beep*ing annoying."
2. A video of Kathy Lee and her co host on The Today Show going over the winner of Album of the Year. So funny, here's a link.
3. "I can't believe that unknown artists will earn a world-renowned artists like Justin and Lady Gaga for that reason cease to believe in the legality of prizes." (man, that girl was REALLY trying to sound smart. I love it.)
4. "It's a weird world we live in when someone called Arcade Fire can win a grammy n Justin Beiber doesn't!"
5. my personal favorite: "What the *beep* are The Arcade Fries?"
"So can you understand? Why I want a daughter while I'm still young. I want to hold her hand and show her some beauty before this damage is done. But if it's too much to ask, if it's too much to ask-- send me a son."
I've been doing some research on Angelmans (shocker, I know) this week and put something together that I found interesting. One symptom that can go along with this syndrome is "sensitivity to heat" and my brain dismissed that immediately as a sensitivity to hot water for whatever reason and I thought, "nope, Elle doesn't have that one", if anything, she seems to be more tolerant to hot water then most kids. She seems less sensitive to all pain to be honest and always has.
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!
Well, here we are on the other side of the big appointment and I'm feeling pretty good about things. It started with a visit with an intern and some lady from Italy joined her (she didn't talk much and I never fully grasped her role). We talked to the intern about Elle and my history with pregnancies, Elle's history, and mine and Rob's family history, including how many in our family, how many kids our siblings have, lots of stuff. Then they left and had a little meeting with the doctor. After their meeting, they all came in and the doctor introduced himself to us and we got started. Because of all I'd filled out and mailed in, and his meeting with the intern, he already had wheels turning about what Elle's symptoms might mean. It turns out that his initial 1st best guess was changed after spending some time with her. He came into the room thinking she most likely had Rett which is what my OT had suggested (and scared the crap out of me).
After observing her for himself he thinks this is not the most likely scenario. In person, she presents symptoms more congruous to "Angelman's syndrome". After questions, a pretty informal exam of a few body parts (mouth/teeth, belly, back and legs), he feels fairly good about this being what she may have. Rett is still in the running, but after a lot of explanations on how genetic mutations work, he explained that if she has Rett, it would be a variation of it and not classic Rett. If she has Angelman's, she could indeed have straight up, classic Angelmans, or she could have a variation of it. (If you think at this point in my knowledge I am going to be able to explain cohesively the difference between classic and variations, you are mistaken. I can tell you that symptoms vary in severity with these syndromes, even when you have the same strain. If you start talking about different strains or variations, they vary even more.) He explained that there is a simple blood test that can prove she has it (it detects 80% of the strains or cases, I'm not sure which), so that is the path we are taking first. If it comes back negative, he will test for Rett. If that comes back negative, then he wants to do another test that tests the chromosomes on a more molecular level (don't worry, all of this goes over my head) and with this test he would for sure be able to find the abnormality and diagnose the Little Little (it would pick up the other 20% of cases of Angelmans for sure). So, as long as insurance doesn't battle us, we will do the blood test as soon as we get the "all clear".
Rob and I feel good about Angelmans. It seems to fit her, and even though there are things about it we necessarily don't want to hear (severe speech impediments, severe cognitive disabilities, etc.), we can't ignore that fact that it feels right and most of all, that Elinor feels like she is exactly who she is supposed to be, so we can't argue with what we know and feel. I linked Wiki's page on Angelmans with this post, so you can read up a little about it. The doctor was optomistic that she won't be battling the seizures since they haven't manifested yet. He said they manifest before two and since Elle is closer to two then one, he felt like this probably won't be a factor. Wiki says under 3, so I don't know. I am nervous about seizures. They seem to go hand in hand with the kids that have difficulty sleeping longer then 5 hours at a time, which Elle also has no trouble with (she is and has always been a fantastic sleeper), so either all that is in our future, or we are incredibly blessed, I don't know, but I feel hopeful.
There is A LOT I want to say about how I feel about this diagnosis, but I didn't name this post In Limbo just because it is a Radiohead song. I named it that because I feel that's where we are riding right now, waiting for a diagnosis, and talking too much about my feelings of Elinor having this syndrome is a little premature. (Translated: If the doctor is wrong, I would feel like an idiot). I did ask the doctor if he thinks there is any way we are NOT dealing with a genetic problem and he came back almost positive that this is the place we need to be. I am quite surprised with the amount of peace I feel knowing this. I explained a bit about how a genetic problem, while scary, feels easier to accept and know that Elinor was predisposed to be who she is and nothing I did or didn't do would change that. I was probably more worried I did something wrong somewhere in bringing Elle into this world then I admitted. I even entertained the possibility that she had gotten hurt sometime falling or something that had traumatic consequences and I didn't realize it (hey! I'm a mom, I worry). So basically, this is where we are at, we will keep you informed cause there is definitely more to come. The doctor is optimistic that we can have the test done and the results back in about two weeks.
Elle taking a comfort/bottle break with daddy while at the hospital.
These pictures are back: (Yes I know I already posted these, but astute readers will have figured out that I removed them and replaced them with others.) (Why? Cause they didn't fit the post and these pics need to fit the post.)
These were taken in Wyoming when Elle had her hair up in a pony tail, had it removed, took and nap and woke up thusly.
Total Kodak moment.
Elle went to the eye doctor to rule out eye problems (or get them fixed, so they would not be a problem). Turns out, doctor's words: her eyes are perfect. (But part of the process of finding that out was getting them dilated, which landed her a pair of sunglasses to wear that afternoon. We mostly just kept the house dark and she was just fine, but the glasses were pretty cute.)
Story: Scout and Elle spent a little time hanging out in the polar bear tent one afternoon. Scout with a lantern, book and an oreo cookie. Elle with nothing except feeling the tent sides and hearing the zip zip zip sound (a wonderful past time for Elles). After a while though, Scout kind of forgot about her cookie and Elle saw an opportunity:
Look at how far she had to stretch to get that cookie! (You can see where the pieces are that she hadn't stolen yet.) Her therapists would be so proud.
She was pretty proud of her cookie thievery at least.
Does this look familiar? It happened within like 2 days of the last incident. This time though I was well aware of how tired she was, but knew she'd have a much better nap with some lunch in her belly. She got much ravioli down before she succumbed.
FACT: one or two bites of sandwich is MUCH easier to clean off of a sleeping baby then ravioli all over the face and up to the elbows and squished gloriously through the fingers. Good thing daddy was home for this one, clean up was a two person job. She kept opening up an eye or two and giving Rob a look like, "just let a girl sleep!"
Here is just a cute moment the girls had last Sunday morning. By the way, "Peaches" is a baby wooly mammoth from Ice Age 3, so that comment wasn't quite as random as it sounds.
