So, so so so so so.

Yesterday we met with Olivia's geneticist to discuss the latest MRI and Olivia's overall health. 

So, good news? Not really. 

Better-than-we-were-thinking news? Sort of.

Anyway, let's get to the ugly. 

Olivia has a "new to our knowledge" tumor in her left ear/neck area. The geneticist and neuro-radiologist took time today to compare a number of Olivia's past MRI scans. Apparently, this tumor has been there since 2010. 

Thinking back to 2010, we (parents and doctors) were focused on how Olivia's skull fracture was healing. The scans at the time of her accident also found the optic pathway tumors, and then it looked like they were causing vision loss and she may need to start chemo (Details can be found in the links on Olivia's NF1 page).

So no one was paying attention to her neck. 

What does this mean? 

So, this news is good in that the tumor's growth has been occurring over the last 2 years instead of over the last 6 months. There is evidence the left neck tumor is going through an active growth phase - more visible asymmetry of her face, chewing with mouth open more than usual, complaining about ear pain when she wears headphones - but it's also possible Olivia is going through an active growth phase as well. 

So, the plan. The plan. The plan. The plan.

We have her Nov. 2012 MRI which shows about 90-95% of the tumor. Olivia will have another MRI in 3 months. She will have a third MRI 3 months later. They will examine the volumetric growth rate of the 3 scans. If the growth rate is less than 20%, we leave the tumor alone. If it's more than 20%, then it's time for action. 

The 3 possible options with NF tumors- 

First option- leave it alone if it's not causing problems or growing faster than Olivia, such as the ones on Olivia's optic nerves- no vision loss, stable size, no action. This is the best case scenario. 

Second option- surgery to de-bulk the tumor, which is the last resort treatment. It's unlikely surgery would get all of the tumor and the tumor is growing on facial nerves which could mean loss of sensation of her face.

Third option, chemo to slow the growth. 

So, so so so so so, we wait. 

Last night I was talking all this over with my mom and she gave me a pep talk (which I needed, moms are good at that), reminding me of all the good things-

Olivia's optic pathway tumors are stable. The tumor above her right eye is stable. The tumor inside her brain is shrinking- the MRI report states "treatment is effective." What treatment? There is no treatment. Only a little miracle easily overshadowed by the bigger worries. 

Yesterday, the doctor was impressed with her happy attitude, her coordination, her ability to sit next to the edge of the table without falling off, her ability to contentedly play while we talked, her smiling and smirking semi-cooperation (Olivia can you raise your eyebrows? She replies with a smile so big it crinkles her whole face, "No" showing the doctor exactly what he is trying to see- that there isn't any face paralysis). 

Olivia is happy. Yes, some things are harder for her, but she keeps going. She is a unique and wonderful part of our family, and we love her so dearly. 

2 year old ham

Thank you Sophie for your un-cooperation. It was fun!

Dear Santa

Because we couldn't possibly have a nice, peaceful evening setting up the Christmas tree!!

HAHAHAHAHAHAHAHAHAHAHHAHAHAHA!

Hey!

Christmas decorations - check!

Turkey Run

My pictures from my turkey day run are up. 

I wish I didn't look like I was dying when I'm running. 

I like to imagine I appear calm and collected, contemplating some deep thought of the cosmic universe while smoothly running down the road. 

But I know I'm red-faced, huffing and puffing, and sweaty, and I forgot to put up my headband so it's hanging around my neck, and I'm running wobbly because my hip still hurts like HECK, and my thoughts tend to be "WHAT WAS I THINKING?!" 

But I do like it. I miss running. Walking on the treadmill stinks. 

Zazoosh Utah Human Race

You can search by my bib # 8312 if the link doesn't work. 

Thanksgiving Weekend

We had a wonderful, relaxing Thanksgiving Weekend. We are so grateful for all of our many blessings, and our wonderful family and friends who love and support us. 

We are so incredibly grateful!

My 3 little helpers - My girls love peeling carrots and Dade keeps the floor cleaned up. 

 

Thanksgiving Day 5k - my pelvis is still giving me trouble, but I couldn't resist running and had a great time anyways.

Project time - making paracord bracelets

I showed my girls a veggie turkey on facebook and they insisted we needed to make our own. It was fun :)

Veggie Art 

Being walked by the dog

Tormenting the dog :)

These girls spent hours playing with these cups. They had so much fun stacking them in different combinations and knocking them down. 

Homeschool - Late Fall/Early Winter 2012

Simplify! Simplify! Simplify!

This is the message I keep getting from Heavenly Father about our homeschool. But there are so so many wonderful opportunities and fun things I want to do so I start to wander away from the plan. Then I feel overwhelmed and start to panic. Then I start praying about what to do. And the message comes again, loud and clear:  

Simplify! Simplify! Simplify! 

I'm working on it. Keep drilling it in my head. I'll get it. 

So while we are still using many of the same resources, we have simplified the assignments. I was also able to combine poetry, grammar, and artist study into one resource when a friend told me about the fabulous language arts books of Queen Homeschool. 

We are still involved with My Tech High and the Insight Liberal Arts Academy (Southwest Commonwealth), but we are scaling back on how much time we spend away from home. Well, we're trying. 

Devotional
Book of Mormon
The 21 Rules of this House
Prudence & The Millers

PE
Some friends of ours do Taekwondo and they recently gave all 4 older kids a free 30-day trial coupon, so we're trying it out in December. Olivia & Jolie will also have swim lessons on Saturdays. (We have found that when Olivia is not involved in consistent physical activity 2 or 3 times a week, she becomes easily tired out and will often lay down to rest- this is a due to her NF1.)

Austin
Math - ALEKS and Kahn Academy videos 
Computer Literacy - My Tech High 
Intro to Robotics - My Tech High 
Medieval History
Language Lessons for the Elementary Student Vol. 1
Math Facts for Copywork
Knights of Freedom
First Lego League Club

Nyah
Math - Teaching Textbooks & DreamBox
Digital Media - My Tech High 
Art class at recreation center
History of the Horse
Language Lessons for the Elementary Student Vol. 1
Math Facts for Copywork
C8Kids
Young Stateswoman

Olivia
Language Lessons for Little Ones Vol. 1 & Vol. 2
Math Lessons for a Living Education: Book 1 
Speech
Reading with Mom- fairy tales, mother goose, picture books, etc.
Liberty Girls

Jolie
Language Lessons for Little Ones Vol. 1 & Vol. 2
Math Lessons for a Living Education: Book 1 
Reading with Mom- fairy tales, mother goose, picture books, etc.

Sophie  (Can't stand to be left out!)
Coloring
Counting
Reading with Mom- fairy tales, mother goose, picture books, etc.
Listening & soaking up everything going on around her!