Ashley helps out

Ashley helps out
Our dear friend Ashley came to lend us a hand.  Jaime had some very critical business in Denver, and would be gone for 4 days.  She felt horrible about leaving, but we knew she didn't have any choice.  Ashley is an SMA veteran, so she knows the care plan very well.  Ashley's daughter Skyler was a Type-1 child, who passed away a few years ago.  We've written about Skyler in the past "Georgia Aquarium and Skyler".  Ashley and Kyle [husband] have visited us a few other times as well.  Ashley is the photographer who has taken most of Nora's most rememberable shots.  

Initially Ashley did the backend support work like: cleaning Nora's equipment, cooking, reminding me I needed to stop and eat, running to the store, and of course, entertaining Nora.  Ashley also helped with Nora's transfers from bedroom to living room.  I carry Nora like a guy... it's in my nature and I lack breasts (which actually help when carrying a child).  Jaime has the ability to carry Nora and her BiPAP together, without getting tangled in the 6-foot hose connecting the two.  It's beautiful to watch and it's not uncomfortable for Nora.  When I do it, it's a damn mess and dangerous as hell.  So Ashley helped me.  We'd make a train of sorts - I'd carry Nora in my usual ackward way, Ash would follow behind holding the BIPAP machine which is tethered to Nora by the 6 foot BiPAP hose.  We did that between 6-8 times every day.
Ashley and I played a ton of Disney Infinity 3.0 with Nora too.  I had built a special controller for Nora, so she can actually play.... instead of only watch.  Nora is really good at it too.  (more about that later).  
In the evenings, we'd take Nora outside and play with bubbles, or airplanes, or parachutes.  
For the first day, Nora kept calling Ashley "that girl".  She'd say "Daddy, mabe -that girl- can bring it over here"  or "Where did -that girl- go?".  Then on the second day, Nora referred to her as "Sara" (the girl that cuts Nora's hair) a few times.  On the last two days though, she finally got her name right.  
Because Nora was still "sick", she needed to be monitored every second.  Nora was struggling and the nights were the worst part.  I would rub Nora's sore back and feet for hours just to get her to fall back asleep.  She would sleep for a little while, then get some mucus in her throat, and we'd work to get it out.  Then the whole process would start again - all night long.  So, none of us really slept.  In the 4 days Jaime was out, I got less than 12 hours of sleep.  
The four days were some of the most difficult days ever, however; with Ashleys help, we made it through.  We can not thank Ashley enough!
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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.