Welcome

Our website is dedicated to our family and the struggle of our child, Nora, who has a terminal disease called Spinal Muscular Atrophy (SMA).

The purpose of this website is to celebrate Nora's life by sharing as much as we can.

We appreciate all your feedback and comments. Please keep them coming.

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The Goodentree Story

The story of our family and how the terminal diagnosis of Spinal Muscular Atrophy changed everything.

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InsideSMA

Our Sister website that gives advice to SMA families. We also sell a variety of products that help SMA children to move and interact and stay healthy.

 

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Nora's Videos

Nora's own YouTube channel. She has over 70 videos for you to watch with more always being added. Stop by and subscribe to support us.

 

Concrete weekend

 Concrete weekend

We spent most of last weekend working on Nora's basketball goal.  We've dug the 48" deep hole and now had to fill it with concrete.  I mixed the stuff and Jaime would help me pour.  Nora supervised the whole process but obviously becamse terribly borded and started singing:...

Nora, the leprechaun

Nora, the leprechaun

The weather is getting better 'round these parts, so we got Nora outside on St. Patty's day.  so, Jaime and Nora decorated the driveway with chalk.  We're still working on getting Nora's basketball hoop hole dug, so if the weather keeps up we may finish before summer.  

It's always so easy to photograph Nora even at 6.  She has to work hard though - constantly switching her focus....

What'd She Say Wednesday #26 "by himself?"

What'd She Say Wednesday #26

 

Nora started this new thing. She likes to keep everyone caught up, so she asks us to tell each other about what Nora just saw or heard. It's most often used when Nora's watching TV or if we tell her something she thinks is funny. So almost every morning when I leave, and again when I get home, I usually hear "Tell Daddy about the ....." or "Tell Nurse Kim about ...."

Nora: "Nurse Kim!"
Nora: "Tell Daddy about the fairy"

 

 

Nora and the snowstorm

Nora and the snowstorm

So we had a bit of a snowstorm in Tennessee as did most of the country.   Of course Knoxville, being totally illequipped to handle any snow, much less a few inches resulted in a complete city-wide shutdown.  Nora didn't have school for two whole weeks! Coming from Wisconsin, that is completely ridiculous.  But, it gave uss a few opportunities to get Nora outside to play in the

What'd she say Wed - USELESS EMPTY BRAIN

What'd she say Wed - USELESS EMPTY BRAIN

So Nora loves the movie Big Hero 6. I've mentioned this before, but the main character is a 13-year-old boy named Hiro Hamada. He's a genius. One of Nora's favorite quotes from Hiro came when he was failing to think of an idea to impress a robot instructor. After apparently trying for hours to think of something, he gets frustrated and slams his head on his desk and yells

The miscellaneous post

The miscellaneous post

Let's see... we finally cracked open Nora's birthday pinatas one evening.  Although there's really no more cracking or even hitting involved in pinatas anymore.  They all come with like two dozen pull strings attached now - only one string does the job and the rest just simply detach when pulled.  Which was fine because it was so stuffed with toys  since Nora doesn't eat candy.  I would have likely pulverized..

Nora's 6th birthday party weekend

Nora's 6th birthday party weekend

Nora's birthday was a blast.  Like I said in the previous post, didn't have a ton of plans so we did the private home party thing.  With Cold/flu season being upon us, we couldn't risk having a bunch of kids or adults around Nora.  

While Nora was sleeping Jaime and I filled a tremendous amount of mylar/foil balloons and decorated the house.  We had a big minion happy birthday banner and another one for Monster High, streamers, confetti, cupcakes etc.  We setup games like...

Nora's birthday is coming

Nora's birthday is coming

TJ: "What's the penguin's name?"
Nora: "Poop"
TJ: "You named him poop?"
Nora: "uhhuh"
TJ"That's awesome"

Nora's 6th Birthday is almost upon us.  We initially planned to take Nora on a dolphin encounter thing in Atlanta.  After Jaime found out there was a no camera rule, and you only got 10 minutes, that idea fizzled.  So we're going to have a little party at home 

The truth about shelf elves.

The truth about shelf elves.

Our Elf on the Shelf (Chloe) put on quite a show this year.  All thanks of course to Jaime who provided the inspiration for Chloe's antics each night.  Chloe's job was to monitor and report Nora's behavior - okay, let's be honest about Elf on the Shelf here.  They are recalcitrant little tattle tails! All of 'em!  they run to Santa each night to tell their little hearts out.  Then after they finish tattling on your children, they return to your home and get caught doing naughty elf things....