NF Symposium

This past weekend I attended the Children's Tumor Foundation - Utah Chapter NF Symposium at Shriner's Hospital. 

The first presentation was Genetics 101 given by Elena Moyle, a genetic counseling student. Much of the basic info I remember from high school/college biology, but there were some specifics to the genetics of NF1 that was new information. 

 

The next presentation was given by Juliann Allred, a neurologist - she talked about nerve compression and how to keep the nerves healthy.

My good friend Kelly Carpenter did a couple presentations about the Children's Tumor Foundation's NF Registry and upcoming Utah fundraising events. 

There was a fabulous presentation about learning issues and educational needs of kids with NF1 given by psychologist Nancy Cantor - which I found informative for Olivia AND Nyah. 

Dr. Viskochil's presentation was about past/current clinical trials and what is going on with them, and then a discussion about social skill immaturity in kids with NF. 

There was so much wonderful, pertinent information, but I still feel like I'm operating on information overload. 

If you are interested in donating to the Children's Tumor Foundation, Kurt's sister, Elaine, is currently collecting donations for the Las Vegas NF Walk. We wish we could be there for the walk, but we will be on vacation. 

Interesting Thinks 10/23/2013

Readiness @ Notgrass Daily Encouragement for Homeschooling Mothers

American Schools are Failing Nonconformist Kids. Here How: In defense of the wild child @ New Republic

Mathematicians Ask Questions @ Let's Play Math

What did you learn? @ Overthinking my teaching

How to Fall in Love With Math @ NYTimes

Rambling Thoughts on Free Play and the Fallacy of a Riskfree Childhood @ The Common Room Blog 

The perfect mom label @ Finding Joy

Pooch-iversary

We've had our darling Dade for 10 years! 

Hiking

Our city has put in some new hiking trails not far from our house, so, of course, we had to try them out. And, of course, my kids don't do anything halfway, so a nice leisurely hike turned into climbing a mountain. 

They complained all the way to the top and I kept telling them we didn't need to go all the way to the top. I said we could turn around and head home, but all of them insisted we keep going.

Going down was much more challenging - I had little girls hanging all over me so they wouldn't slide down or fall on their faces and so I couldn't take pictures - and I almost died laughing when they started saying: "Why'd we go all the way to the top?" "This is scary, we shouldn't have done this" "I didn't want to go all the way to the top!" "It wasn't my idea!" "Nuh-uh, I didn't want to climb the mountain."

Ha! Love these wild and crazy kids!

Happy Birthday Kurt!

What do you love about your dad?

Austin: He's so sweet. He's nice. He helps out around the home. He earns money so we can survive. I like to play video games with him. I like to play catch with him. I like to go to the store with him. 

Nyah: I love that he plays hockey and that he spends time with us. And he cares. I like to play Wii with him and like playing outside sports with him and going swimming with him.

Olivia: I love to go on hikes with him. I love that he finds lizard with us. I love him so much. I love him. His birthday is tomorrow. I want his name, put his name: Kurt Richards. I like playing with him so much. He plays games with me, chess. I like to watch Cake Boss with him, and Dr. Who and Hockey.

Jolie: I love that he plays with me and he plays ping pong with me. I was having fun with him when he was playing baseball with Austin and Nyah. It was fun watching him. He goes on trips and we played and he takes pictures of us and we have fun and stay together. We went on some hikes and it was so fun.

Sophie: I love that he is playing with me. I love him way hard. I love rolling with him. I miss him when he goes on trips. 

I love you Kurt! Your a hard working, sexy man! 

Torture!

To be perfectly honest, most of the past week has been a big blur of tooth pain for me. It started a couple weeks ago with a mild toothache - pain, but manageable with ibuprofen. I went to my dentist, who sent me to a specialist to have a root canal of a tooth that already had a root canal four years ago. I guess I have weird roots with more phalanges than normal, so they weren't all cleaned out the first time around. So he cleaned it out and pack it full of antibiotics to get rid of the bacteria. And then, over the weekend of course, the gum area became infected and I spent a great amount of time laying in my bed shushing & shooing anyone who came to talk to me. 

It's still not over - I had it refilled yesterday and some time next week I have to go back to my dentist to get my crown repaired and then, at another time, get another crown replaced. But a month ago at my check up, everything was fine and no new cavities. Sigh.

Why is when something like this happens, my kids decide it's time to start hanging on my head and smacking me in the face? Torture! On the bright side, I did get to spend more time than usual reading and watching a few of my favorite movies to try to distract myself. 

I'm taking an adult scholar class through our commonwealth of American West Literature - we've read & discussed Lord Grizzly and a number of short stories - The Ransom of Red Chief was a fun one. I also recently finished The Canyon, but the discussion won't take place until November. 

Last week, we talked about the Greek Hero Journey versus the Hebrew Hero Journey, and then how a bunch of different books fit into these two categories. Very interesting stuff. I'd forgotten how much I love reading & discussing literature. 

Left - Greek, Right - Hebrew, Triangle - man needs balance in all areas for happiness

Also, since it's Halloween, I've been doing some seasonal reading: Washington Irving's "Rip Van Winkle" & "Legend of Sleepy Hollow," some of Edgar Allen Poe's stories, and Psycho is on my Netflix list, but certainly can't watch it with the kids around (speaking of which, if you are familiar with Poe & Psycho, you may enjoy watching Psych season 2, episode 10: Gus' Dad May Have Killed an Old Guy - there's a hilarious moment in the middle). 

I watched Miss Pettigrew Lives for a Day (the book is very similar and fun, too), Simply Irresistible, some of Ken Burns The West documentary, a few Psych, and some Horseland and Magic School Bus :).

And the results are in.....

Nyah does not have an autism spectrum disorder. 

I'm okay with being wrong. 

However, as one of my friends said, I'm getting off one roller-coaster and jumping straight onto another: 

The psychologist believes Nyah has depression and anxiety and ADHD. I think it fits with the trouble we are experiencing. It breaks my heart to know my dear girl is depressed and anxious all the time.

But I am optimistic - I knew we were on the right path when the psychologist said she wants to focus on Nyah learning the life skills to handle the depression and anxiety first, and worry about the academic stuff down the road, if its still needed, as the life skills may lessen the academic concerns.

Pets

Bad news: Our last two fish died. So sad. 

Good news: Our last two fish died? Oh, I know they were my idea in the first place. Sigh.

Temporary pets - Snails

They are surprisingly entertaining to watch. 

Sleepover

Fall weather

And lots of in-between rainy days too :)

Hobbiton

On a recent trip to New Zealand, Kurt took advantage of a free day and went to visit the movie set of Lord of the Rings and The Hobbit. 

Champions

My co-ed team won the championship for the umpteenth time. 

Stung

I don't know what Sophie was doing - probably trying to grab the bee which she insists she wasn't, but a sting on the middle of a finger? 

While playing in the leaves, Jolie picked up a leaf she liked and it had a hornet on it and the hornet hopped over to her arm and stung her. 

Random things in random places

Spaghetti noodle on kitchen blinds.

OLD spaghetti noodle on kitchen blinds.

OLD, HARD spaghetti noodle on TOP of kitchen blinds.

FYI, it's still there. 

Las Vegas NF Walk

My fabulous sister-in-law, Elaine, and her husband, Nathan, are fundraising for the Children's Tumor Foundation and have a team walking at the Las Vegas NF Walk. Please consider making a donation or joining her team if you are able! Thank for all your support of CTF and our sweet Olivia girl!

Fun with school

Playing with potato heads at commonwealth

Austin making Platonic Solids with Legos 

PE

Hanging up clothes

Project time

Science experiments with friends

What's Nyah doing?

More PE

Nyah & ASD

I know people don't think I'm lying when I tell them Nyah is on the autism spectrum, but I also know they don't see the day-to-day, year-to-year situations that have led me to this point. 

They aren't trying to work with her black & white, profoundly inflexible thinking. 

They aren't trying to help her calm down when she's rocketed past her ability to control herself. 

They don't see the intense fear and pain in her eyes when she's extremely distraught and can't stop herself.

They aren't trying- desperately, daily- to help her see she is an amazing, talented, beautiful girl, and mistakes & mishaps do not mean her whole entire life is horrible and worthless.