Monday, September 26, 2011

Potpourri (or a little Scout, a little Elles and a little Radiohead)

I've got some updates and information and blurbs about the lot, so I figured I would combine them into one post so you could get caught up on three of my very favorite things 

(I have more then 3 favorite things- Rob comes to mind, but I don't have an update of him on this post).

taken on Saturday morning, being a black footed ferret

Scout suffered this weekend with another UTI.  Of course my girls only get things like this on Saturday, making it hard to get to see a doctor.  Saturday she had a stuffy nose and a sore throat and a low grade fever.  Saturday night she showed signs to me of a UTI.  Sunday she seemed pretty good if not a little feverish.  It was the Primary program in church and she had a speaking part, so we convinced her to get dressed and go anyway.  She has been nervous like crazy about this for months and has practiced, memorized her lines, and even had the courage to do it (once in a while).  We thought it was important that she ended up doing it, so we took her.  I would like to report that she was such a brave good girl and did it.  She was so scared and it took a lot of convincing and Paw Prints in a little purse around her shoulders going up there with her, but she did it.  We really were proud of her.  She said her part as fast as I've ever heard her talk, but she did it without looking at her cheat sheet AND feeling like crap.  I took her home after sacrament meeting and spared her the other 2 hours if that gains me any points for forcing her to go.
She took Advil through the day and seemed almost like her old self.  She woke up this morning pretty sad and hot and her back hurt in the kidney area.  Uh oh.  I made a morning appointment for her and she is now armed with antibiotics.  The deal is, the doctor said that if she still has a fever noon tomorrow, he wants to see her again and will probably recommend having the antibiotics administered through IV and that means the hospital!!  I guess the fever, which was over 102 at the doctor and it obviously getting into the kidneys makes the doctor not want to take any chances.  Yikes.  I would hate to have this happen to her.  She really seems great right now, so I have confidence that she will be fine with the antibiotics we have at home.  I can hear her right now singing cute songs, putting on costumes and playing with her jungle animals.  We did decide to get her checked out fully in a few weeks in regards to her urinary tract (she was diagnosed with reflux in the kidneys at about 3 months old, when she had her first UTI).  We are going to revisit those tests and see what they can tell us, including an ultrasound and this xray thing that is very unpleasant involving a catheter and medical imaging.   She had that test twice before 2 but not since.  This time they are going to sedate her cause it can be "tramatic" as they put it.  I think it was traumatic for her back in the day and very possibly what has caused her fear of doctors.  She isn't as scared of doctors right now as needles and shots (which of course go along with doctors), and I am afraid she is going to be getting some of those.  Good news is, they discovered that they can do it in Provo (Utah Valley Medical Center) instead of up at Primary's where she had the others, so that is something I guess.  We are really hoping and hoping for results that don't include the "S" word.

************Scout Update***************
She woke up fever free and went to school, so I am very optimistic.

Ellsies got fitted last week with splints for her thumbs.  They are worn all the time, not including baths and eating.  They keep her little thumbs out so she doesn't keep them in like she does and scratch them and all that bad stuff.  If they do their job, they should train her brain not to do that and make them used to being out and have her hands eventually work like normal little hands should.  She has really gotten good at adapting to no thumbs and holding stuff with them in and that is no good, we would much rather her use her hands like humans, as opposed to apes.  They don't seem to even phase her, she is just fine with them on (of course she is, given the tolerant little thing that she is), and we are noticing that she really doesn't do the hand flapping with them on.  She relaxes them a lot more.  Once I take them off however, she has a hand flapping party, but it's only been a couple days, so I would love to see that stop too.  Wouldn't that be awesome?  We are surprised that she stops the behavior with them on though.  Didn't think it would be that dramatic, but it seems to be right now.  So we are encouraged.  
We are heading to Primary Children's tomorrow, going to an appointment/ meeting with her doctors.  Dr. Carey arranged a meeting with us, himself, Dr. Filloux (her neurologist), and I think some interns, etc.  where we are going to go back to square one with her diagnoses.  He told us on the phone that it isn't really that strange if she has Angelman's that we haven't picked it up on the tests yet, (I assume this is because since she only has about 20% of the symptoms, it isn't a stretch that she would be in the lesser 20% cases that aren't picked up by the tests he has run thus far.  He listened to Rob tell him his concerns about her symptoms and things we feel she has lost and digressed in and he mentioned that it could possibly be something biochemical.  I googled biochemical and got a lot of talk about bio polar disorder and schizophrenia and I know that can't be right, so I decided quickly to not google anymore and just wait for the appointment.  I did however mention it to her cognitive therapist and she said he would be talking about babies that are born with an inability to process some metals or proteins or something like that, and so as the thing they can't process builds up, their body starts acting strange and reacting to it.  This is very interesting to me, thinking about the slight possibility it is something like that and wondering if she could be treated with a pill or something.  I don't know, trying not to think about it and for sure not getting my hopes up.  Just interesting.  I'm sure we'll know more tomorrow.   The appointment is at 4, and I will for sure update soon.  I would like to point out how horrible and complicated our day could be tomorrow if Scout actually had to be admitted to the hospital.  Seriously?  Could that actually happen?  Cause I think that is just a little too much don't you agree?  Fates?  Heavenly Father?  Karma?  I am letting you all know I'm not seeing that as being very nice.  (and if it is the way it is going to be, I'm going to need some instructions on how to figure it all out and make it work.)   

***************Elinor Update****************\
Last night's appointment went great.  Dr. Filloux was unable to make it at the last minute, but that didn't really matter to me.  Dr. Carey has been discussing Elles with colleagues from around the country.  Since he had a few directions to go when it comes to our next step in trying for a diagnosis, he thought it best to see Elle again in person before he decided the smartest direction to go.  His recommendation is to go with a broader rett test (his other idea at this point (the idea from a Angelman expert in Boston), is to do an eeg test -which measures brain waves)  apparently Angelman brains have really screwy eeg tests even if seizures aren't present.  If she gets a screwy test result that will tip the scales towards it being Angelman's quite a bit.  BUT given her (I forgot what he called it- the movements she has developed with her fingers), he would point more towards rett.  Here is some good news:  1. She would definitely have a lesser variant of the syndrome, and he would not expect us to see any dramatic losses at this point (ie my fear of losing eye contact and eating capabilities are very very unlikely given how she presents).  2.  Seizures starting at this time in her life with rett (after 2) are highly unlikely.  3.  Since she has shown improvement in all areas of development according to her last evaluation in August and even though we have seen some things drop off her abilities/stuff she does, he said that she would not classify as "regressing".  We figured that any loss would mean she is regressing, but apparently since she is overall showing improvement, that is a promising thing.  4.  Dr. Carey upon observation, feels that her limitations with her hands and body are affecting her cognitive abilities more then we might guess.  This gives me great hope that we will see greater things from her.  She really is more interested in toys these days and she is showing quite a bit of improvement in her motor skills- therefore, they will improve and as they improve, her cognitive skills should improve.  5.  He gave us a bit of hope about some things rett kids can do given her possible variables (ie some verbal skills, etc.)  6.  It was nice again to see with my own eyes such a wonderful doctor being so invested in our little girl and the long amount of time he was willing to spend talking to us and listening to our concerns and explanations (not to mention all the time he has spent discussing her with his peers).  It makes me sad to think that everyone in a situation similar to ours doesn't have the same experience.  We have absolutely hit the jackpot with Elle's team of doctors and therapists.  It makes me a little weepy thinking about how great everyone is and how much they invest in and love our daughter.  That is soooo important to you as a parent.

Also--- Dr. Cary pretty much shelved the idea that she has a biochemical problem yesterday given her overall good health.  She really is super healthy and almost never sick.  That doesn't mesh with having a biochemical problem. 


Thom Yorke announced that they are going to be TOURING next year.  Rumors about a tour have been circulating for a few months and taunting me, but I haven't allowed myself to believe it.  Having Thom say it in so many words this week cinched it for me.  HOLY CRAP!!!!  I am going.  There is no way they are coming to Salt Lake, so Matt, B, Cat?, Rob......pack your bags kids.  We're going-- this is your chance to see Emily hyperventilate, have a heart attack, faint, or any combo of the three  (I wouldn't be surprised if they came to Denver or Vegas, but we may have to go to California).  I am not missing it this time if I have to go without food for a month.  2012 is also seeing my parent's 50th wedding anniversary which the family is going to celebrate in Mexico in August.  So I am thinking that 2012 is going to be EPIC as long as the 2012 Mayan thing doesn't pan out- if it does, that would make it epic too I guess, but the end of the world is not allowed to happen until Emily sees Radiohead live.

*shaking my fist at the Mayan gods*

Also, this has been a grand Radiohead week, they performed on the season premier of SNL on Saturday and tonight they are going to be on a Cobert Report Special.  Good, good times.

Here are a couple promos that aired for SNL and they are so funny. 
Alec Baldwin cracks me up (I particularly liked the first one).

*****Colbert Report Update*****

It was really exciting watching this and seeing that the majority of the show was dedicated to Radiohead.  Thom's interviews were as endearingly awkward as ever and I must say- I love Stephen Colbert, but him juxtaposed with Radiohead was...... I don't know-- a little cringe worthy a few times.  BUT didn't take much away from it.  (Maybe I'm just not in the mood for any shenanigans when Radiohead is around- I'm all business.) Made me laugh a lot though.  I just know they have very very strong feelings when it comes to matters of global warming and what they do as a band to leave as small a carbon footprint as possible (why they won't come to SLC) and they weren't given a chance to talk about too much of what they do, but I suppose that doesn't matter too much.  Look at me!  I feel like I am coming across as negative about the show and that is not my intention.  I absolutely loved it

"Prepare yourselves Radiohead, you're about to meet television face"

Below is the shining jewel of the night, they sang a song I hadn't heard yet called "The Daily Mail" and it Totally.   Kicked.   My.   Trash.    (in a really good way).  This song is from a live session they did and put on the interwebs called "From the Basement" back in June and I hadn't been bothered to listen to it yet.  Who knew they debuted a fricken amazing song on it?  Not me apparently.
Can I mention how much I love that Cobert's Harry Potter joke made Thom laugh?  (that intro was cut out of the show, so didn't see that until now.  Awesome.

Oh, and did I also mention they surprised me with "The National Anthem" at the end?  No?  Well they did.  Second best moment. 
(Worst moment was cutting the program off before the song was done.  I got to finish it this morning online though.)


Ami Hart said...

Well, you can bet they will come to NYC area, and you know you (and any various and sundry relations) are welcome to crash here if you want to hit the show here.

Emily said...

Has already crossed my mind Ami, glad I actually got invited though instead of having to ask if needed. I am going to stay on top of it and I just don't know how ticket sales are going to go, I'll keep you posted. NYC would definitely be a fun option. We have a crash site in Denver too.

Ami Hart said...

Let me know when and where tickets go on sale. I would love to surprise Alex with tickets.

Sue said...

I love that picture of Scout! I love that she still does the pretend I'm an animal thing. (You are probably thinking, I should take her for a week and then decide if I still love it.) I also giggle everytime I see the current list of who everyone is. You being Shaggy cracks me up, but not as much as picturing Rob wearing an ascot. I hope her UTI gets better. I remember when you had to take her in for the catheter test. She was so young and little.

I thought Elinor had something on her hands when you texted me those pictures of her inspecting her new Sesame Street dunglees I got her. I thought they were bracelets or something.

I fell asleep watching SNL the other night. When Radiohead came on, they totally invaded my dreams. I dreamt they were on stage at SNL, and it was pretty normal, except that in the dream Jonny had this total bushy beard. I mean mountain man bushy, unkempt, long, scraggly beard. I remember thinking it was so strange, and I wondered what you were thinking about it. Nothing else at all was weird about the dream, it seemed so normal and real. So normal, that when I woke up in the morning I thought about it and wondered if I really had fallen asleep or if Jonny really did have that beard. I decided it had to be a dream, because the beard was so crazy.

If you guys all do go see them out of town I want to go too! Just for the trip, not for the concert. If you want to take Elles, I can babysit! Just like in Vegas for the Pixies.

Haley said...

Why do we all keep having dreams about Radiohead??!! Weird! Anyway, you guys could come see it in Pittsburgh!!! Please?! :)

Emily said...

Ami- Alex would LOVE that! Would you go with him? Has he ever seen them live?

Yes weird about all the Radiohead dreaming going on. On the way to the hospital today, Rob and I saw a dude on a motorcycle with dark hair and an extremely unkempt wild mountain man beard that Rob pointed out to me. I totally thought of your dream Sue and told Rob about it. Just a weird coincidence- don't see that everyday.

Scout dreamed last night that we gave Elinor away :( She was pretty sad and said, "but that would mean that I wouldn't have a sister anymore". Break my heart. She said that we gave her to some people and then tried to get her back and even got help from the police, but we never got her back. :( :( :(

Emily said...

Haley- Does Pittsburgh have a good subway system? They have figured out that the biggest impact to the environment when it comes to rock concerts is the people driving to and from the concert, so they pick cities with more walkers then drivers and ones that have good bus systems, etc. Then they ask people to use them or walk or ride bikes when going to the concerts.

Haley said...

They have an extensive bus and subway system and they allow bikes on bus routes. The city is actually pretty compact so it makes walking an option. So they might come here! Then Matt and B could shoot over to Ohio since they would be so close. :) When do you find out the cities they are going to?

Emily said...

***I updated the Elinor section with some snippets from the appointment at Primary Children's***

Haley (and anyone else who has asked)- I don't know when we find out, they just announced rather unofficially that they are planning to tour next year. I checked the In Rainbows tour destinations and they never went to Pennsylvania or Colorado but they went to NY and NJ like crazy and lots of California stops (including Chula Vista of all places). I'm sure they aren't going to just copy the last tour though, so we will see...........hopefully soon.

Emily said...

By the way, last night I dreamed something about primary kids getting haircuts and having an issue with too many ruffles on their dresses. I had to chuckle when I woke up thinking "I wasted a dream on that weird garbage?? When I could have been dreaming about Radiohead concerts????" LAME HUD LICK SAUCE!!!

Haley said...

Oh and what about the family trip to Mexico??? I've never heard a thing about it until now.....

Haley said...

Also, last but not least, great news about Elle's appointment!!

Emily said...

Well, probably because you're not invited. That's a shame too because you're really going to miss out.

Emily said...

It is great news. Thank you Haley, that's very nice of you.

Haley said...

I'm not planning on going just never heard anything about it. Guess I'm out of the loop way over here. :(

Amy said...

Sorry, that's my bad. I guess I've been kind of busy MOVING lately, among other things!! Grandma & Grandma want to plan a big family trip to Mexico next August for their 50th anniversary and of course, you are invited, too, Haley & family.
Em, I feel like a total scum-bag for seeing you yesterday and not knowing anything about Elle's appointment! I feel bad. I was out of touch for a couple days (didn't have good internet service at Sarah's) and did'nt get on on the blog for a while. Sorry! We'll talk about it this weekend. It all sounds pretty good, though.

Sue said...

I have a couple of problems with Amy's comment. First, you were in town? hmmph! And second, what is going on this weekend? hmmph! hmmph!

Emily said...

Haley- Hee hee. I was about to tell you that grandma and grandma said that the timing was good for everyone including Marcus's school, so I knew you were invited (just didn't know that your mom dropped the ball so bad and you hadn't heard of it).

Amy- Just kidding about the ball dropping. -ok about not chatting about the dr. appointment-- 1. it wasn't on my mind at that time. 2. we had plenty of fun things to chat about during lunch and we can talk about it this weekend, yes.

Sue- Amy was in town for like 2 days, was really busy shooting a movie and running errands for stuff she can tell you about sometime and since I was close, she called me out of the blue that morning and invited me to lunch. So I saw her for maybe an hour and then poof she was gone. Rob and I decided to go up this weekend for conference at kind of the last minute. We are leaving Friday afternoon and will have to leave Sun because of school, but it should be fun and if you happen to have nothing to do like work, we have an extra spot in our car for one such as you. We need to give final approval of the new Phister household you know. At least you were invited to Mexico.......

Amy said...

Yeah, Em explained it well. Quick, busy trip to Provo. I wish I could have seen all of you and it would be fun for everyone to come for conference weekend.

Queeey said...

To help ease your worries about the Radiohead tour, the Mayan calender has already "reset" 5 times, its just how it works, so the end of the world according to the Mayan calendar is just wrong. The calendar will just reset again and we'll be in the 6th generation instead of the 5th. (Yay for homeschool astronomy classes to teach me random facts about the Mayan calendar!)

Ami Hart said...

Hey Em.

I would go with Alex... his goal in life is to get me to like Radiohead. I do have to say, I no longer hate Radiohead. (Can we still be friends???)

I haven't actually given their last album a good listening to, so I'll check it out.

Emily said...

Really? Hate? That surprises me. Yes we can still be friends (if Alex can still be married to you, I'm sure I can still be your friend). No I realize that RH doesn't appeal to everyone, so I understand. In fact, there are people out there that think ALL Radiohead fans are only trying to look cool by saying they like them because they can't imagine that anyone could ever like their music. The logic in that is really flawed, but anyway, you can not like them. Do you at least recognize their genius? Or does it just all totally escape you?

Emily said...

Thanks Karalee! I was actually already pacified by being told that it would be in December anyway (I was under the impression that it was January). December worked for me, because that would mean most of the exciting 2012 events would have been able to happen and the world could end, but having it reset works too.


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