Walking with Sophie

Important things to do:

Smell the flowers

High-five the trees

Torment Love the roly-polies

Ta-da!

Backseat Driver

"Mom, mom, mom- Go go go it's green."

"Stop Mom! It's red!"

"Ok Mom, turn turn turn!"

This munchkin already thinks she knows how to drive and what I should do while I'm driving. And yes, everything is repeated repeated repeated.

Making pretzels

Sights while running

 

Project time

Moon Gazing

and spying on the neighbors :)

Rocket to the Eye

Interesting Thinks 6/21/2013

This is why I don't like summer reading programs or any kind of reading/reward program - What I hate about Reading (Logs) @ Pursuing Context.  Read for the joy of reading!!!

Study: Reading novels makes us better thinkers @ SALON

You can be the making of your child @ ADDitude

Taking it outside @ ADDitude

The Blessing of Siblings @ Beautiful Feet Books Blog

Is it time to loosen the grip on You Family's Time and Minds? @ Parent at the Helm

The Homeschool Scientist - we love science and love finding new resources for experiments.

Olivia & NF1 - the latest

I've been trying to figure out what to say and how to say it. It's so simple and complex at the same time.

Simple: NF1 is a progressive disorder and it's progressing.

Complex: 
First and foremost, *for the most part* Olivia is doing fabulous. She spends most days running around the neighborhood with her sisters and friends, riding bikes & scooters, playing in the sandbox, jumping on the trampoline- happy and laughing. She loves sitting on the back porch with me in the early morning hours, watching and listening to birds, coloring while we chat and go over the plans for the day. She speeds through her chore and school chart so she can play games on the computer or watch cartoons. She's always looking for ways to help others- if you fall asleep on the couch you are guaranteed to wake up with a blanket covering you courtesy of Olivia. 

The last time I did an update on Olivia & NF1 was in November 2012. She did a follow up MRI in February 2013, which is the first MRI to get a complete picture of the plexiform tumor in her left ear/neck area. I spent the next 2 months playing phone tag with the genetics doctor. He finally left me a voicemail- he and the radiologist felt the tumor appeared stable from Nov. to Feb. so the new plan was to do another MRI in 6 months, and no need to send it to the National Cancer Institute (NCI) to have the volume measured. 

I felt uncomfortable with that and wanted to stick to the plan we discussed in November, but after another month of phone tag, I let it go. 

As I said, Olivia is fabulous *for the most part.* Unfortunately, the last few months she's been getting more headaches, chewing with her mouth open all the time, experiencing more pain in her left ear/neck area, and visually I can see that the tumor has been growing. 

In May as I was helping Olivia out of the shower I noticed another tumor (one she's had for a few years on her lower left back) was also bigger. I emailed the genetics doctor, heard back from him (yeah!), and we went to see him this past week. 

When he first came in the exam room he noticed the growth of the left ear/neck tumor right away. Later when he was doing the exam, he put pressure on the tumor and Olivia startled and grabbed onto my hand because of the pain- which is a big deal because she has a pretty high pain threshold. There are so many times we are going-going-going with all our activities, and she'll finally break down in tears and tell me she's had a headache all day long, but didn't want to stop. 

When looking at Olivia's growth chart it appears as if her growth rate is evening out- starting to plateau, while the tumor appears to be actively growing. This may mean the tumor is growing faster than Olivia is growing. 

So, the tumor is becoming symptomatic - causing problems. When talking about Olivia's tumors I've always said, "we leave it alone unless it's causing problems." Well, here we are on the cusp of "causing problems." 

Olivia will do another MRI sometime in the next few weeks. Again, they'll compare it with past scans and hopefully they'll see the need to send it off to the NCI to get the volumetric analysis so we can have actual measurements to chart the growth of the tumor.  Ahem. 

The genetics doctor talked about several potential chemo trials or chemo treatment options, but we'll have to wait and see what the MRI results are and what the doctors recommend. 

The other tumor on Olivia's back has also grown, but appears to be  a surface tumor instead of an invasive plexiform tumor. We just watch, wait, and see. 

All other tumors appear stable- hoorah. 

But the best part? Being the mom to this fabulous girl. Love her. 

Happy Birthday Austin!

12 years old! Austin wanted to go to The Children's Museum for his birthday - this kid cracks me up!

Play time!

Time for a concert

Hard at work

Come take a picture of what we made!

Channeling his inner-sheep

Playing house with his sisters

Trying out his new airsoft gun

But when you bounce do you quit?

I don't think so.

Bounce

What happens when you ride your scooter down the hill and you stumble as your pushing yourself along?

You bounce on your face and your shoulder and both your knees and your hand and it hurts.

Speed Racers

Sophie and her best bud, Daniel

Summer Fun

Playing at the pool

Free lunch at Ikea

Sandbox with friends

Watering the Rocks

I recently read The Day the Crayons Died or the Straw that Broke Mam Bean's Back. It's long but I think it's worth reading and thinking about.

I was reading this on my iPhone while I was also outside watching my kids:

Austin all dressed up for his government simulation camp and waiting for his ride

Nyah racing around on her bike

Olivia & Jolie playing Go Fish on the front porch

And my sweet Sophie watering the rocks in our yard.

Yes, watering the rocks.

It started when I turned on the hose to water a dry spot in the lawn. Sophie commandeered the hose as all almost-3-year-olds do, pretended to help me water the lawn for a minute, then splashed the bushes a bit, before settling down to the serious business of watering the rocks.

As I read Mama Bean's words and watched Sophie, I could hear the voices of possible critics in my head:

Why is she watering the rocks?

Rocks don't need water!

She's wasting the water!

What a waste of time!

She should be doing "XYZ" instead.

What's the point?

What's the value?

What could she possibly be learning?

I realize some people may have a hard time recognizing the value of what she was doing and what she was learning. After all, it's impossible to measure the thoughts and conclusions of an almost-3-year-old as she explores the world around her.

But let's dust off the "scientific method" from our elementary school days and see what we can come up with for a possible hypothesis!

What happens when I water the grass? What happens when I water this bush? 

What happens when I water the rocks? Why are the rocks changing colors? Why are they all different colors?

 What happens when I spray the concrete? 

What happens when I water Nyah? 

What happens when I water Mom? 

What about these bigger rocks? This bigger bush? 

What happens when I water this dirt? What happens when I step in it? 

What happens when I gab the end of the hose? 

Cause and effect, biology, physics, hands on experimentation - the possibilities are endless! 

This particular morning all of my kids were engaged in this type of real-life, hands-on learning:

Austin sat with me on the porch sharing his ideas, theories, and philosophies about what he'd been doing at camp while snuggling with Dade (who has missed his boy so much this week) until his ride came and he was off for another day of camp.

While Nyah was riding her bike she accidentally rode down the side of the house and stumbled upon 3 deer grazing in the backyard which we all tiptoed down to watch until they bounded off. She was annoyed when Sophie got her pants wet, but then dashed off the change clothes and join in the fun.

Olivia & Jolie grabbed the cards and played Go Fish all on their own - Olivia teaching Jolie how to play as they went along. Then they started riding their scooters and bikes down the hill - racing and laughing (and later crashing - more on that in another post). 

It was a beautiful!