Articles in Category: Nora Updates

05 17 Nora's first Spinraza injection

Nora's first Spinraza injection

I had hoped to delivering good news, or at least an optimistic view about the road ahead; however, Nora's first Spinraza™ injection has made us question continuing treatment. There is a specific point I need to make before I begin. The "complications" we experienced were not attributed to Biogen, the drug Spinraza™ or the actual procedure.  All of the frustration and anger we feel is specific to our local medical facility.  In fact, Biogen was a huge reason why we were able to get this drug.  We have been reading all of published medical documents and talking to other families who received injections since its release in December.  

Note: There is language in this story that some may find offensive.

I have included it to give an accurate portrayal of our emotions, as most of this post is in dialog format.

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05 14 Mother's Day

Mother's Day

Happy Mother's day to one amazing momma.  Few could ever hope to match all that she does for her family.  She somehow finds a way to amaze Nora and I almost every single day.  Nora and I would be lost without her.  She deserves more praise than I could ever give.  

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05 10 The Spinraza update

The Spinraza update

On December 23rd, 2016 the first ever treatment for SMA was approved by the FDA. The news was exciting, terrifying and saddening all at the same time. With all of those mixed emotions, we were also scared of what this would mean for Nora and our family. We have waited almost eight years to see a treatment or cure hit the market. Since the day she was diagnosed, there was hope that a treatment was just around the corner; one more year, two more...

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12 05 Boo at the Zoo 2016

Boo at the Zoo 2016

An October update?  but it's December!  Yea, I know, [voice inside my head], but we need to get caught up and hopefully stop your constant nagging.  Sheesh

I am going to try my best to get all of 2016 caught up.  So prepare your hearts for Nora updates henceforth. 

Okay, way back in October, we took Nora to her 5th Boo At the Zoo event.  These trips have only been possible because of how absolutely wonderful and kind the staff is at the Knoxville Zoo [Yes, you Allison].  Each year, they allow Nora special private access to this awesome event.  There are literally thousands of families that arrive in costume to trick-or-treat their way through the zoo.  The turn out is simply...

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11 05 Help us say thanks

Help us say thanks
In the spirit of Thanksgiving, we have to tell you about what Tiffany Green has been doing for Nora.  Tiffany, who you may remember as my friend and long-time sister, gave Nora a pledge last Christmas.  That pledge was to spend 2016 running for Nora - literally ruhh-ning, like with the shoes and the races and the self-motivational stuff.  So, did she do it? Did she really run for a whole year? Share this

10 22 Nora's Wagon

Nora's Wagon
Nora has been tolerating her regular EasyS stroller wheelchair less and less. You know the one I'm referring to if you've been following us for a little while or have watched any of our YouTube channel videos.  The chair is still our main mode of transportation for short trips (90 minutes max).  
Fun fact:  Nora's first wagon was red and plastic.  We recieved it from FSMA, who is now CureSMA. They sent Nora a SMA care package of sorts, shortly after her diagnosis. Share this

10 03 One beautiful girl

One beautiful girl
We recently received these pictures we had taken at the start of the school year.  We were very happy with how great they turned out.  Nora looks so beautiful.
Before the photo-shoot,  Nora was worried about having to wear her mask for pictures, which breaks our hearts because it means she's self conscious about her mask.   At the same time though, she was very worried we would take her mask off Share this

09 13 Moonlit walk wish

Moonlit walk wish
In the evenings, after hurling water balloons at each other (seriously, we do that very frequently), we often take a walk around our subdivision. Jaime pulls Nora in her crappy old wagon and I plod along next to her. Since it gets dark earlier now, I always grab my favorite walking flashlight before we head out. Jaime often complains that we have... Share this

09 02 Our 2nd Grade girl

Our 2nd Grade girl
Our adorable little second grader!  Nora is attending school via Skype and in-home teacher sessions again this year.  However, we did stop by her classroom before the start of the school year, to meet her teacher and staff face-to-face.  They even had a desk set up... Share this

08 12 The huge half birthday

The huge half birthday
Nora was extremely excited about turning seven and a half.  For everyone else who loves Nora, it was a pretty important day too.  Nora had picked "finding Dory" for her decoration theme, but had not seen the movie yet.  She made that decision after watching a... Share this

goodentree    /ˈgo͝odənˌtrēˈ/   noun

derived from our last name: Gooden and the idea of a family tree We came up with the name after we made the decision to start a family (have a child).
When Nora was born and diagnosed with the terminal disease SMA, her story quickly spread, and goodentree became established.