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).
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| taken on Saturday morning, being a black footed ferret |
Scout:
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.
Elinor:
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.
Radiohead:
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.)
