May 19, 2020

There have been a lot of days these past few months that have felt like we are spinning in circles and going nowhere. I have felt it for sure, but Shannon has felt it the most. She's been on a not-so-merry-go-round. She's been given three different discharge dates, is told she's "coming along so well" and "making huge strides" and then in almost the same paragraph is told "aren't looking like you are on track for our current discharge plan" and "need to work harder to accomplish the goals". And around she goes...sometimes good enough, sometimes back a square one. 

There have been many days *I* have looked forward to: Shannon's spine surgery, being told I can be with Shannon,  a doctor telling me she is no longer in critical condition so I would stop worrying about her fighting for her life, getting her breathing tube out, getting off the ventilator, hearing her voice, doing family training so I can be with her, getting her trach out, having Shannon home, and watching her come to terms with her condition and embracing who she is at present. (I'm sure there was more in there) 

Shannon was- thankfully, unaware of most of those days that I felt made me spin out of control. She's had her own list, some of it has been the same as mine: See her family, get a speaking cap on her trach, eat real food (Wawa), get off the ventilator, play with Nigel, get out of her room, go home. 

Today- some of those days became reality!!! Here's the big news I mentioned yesterday!!!

See that little smiley-ish face on the bandage there? Yep. That's where her trach USED TO BE.......do you know what that means? Shannon no longer has an open airway. So she is FREE TO ROAM ABOUT THE BUILDING.....and her workers (and her family who come for training) only have to wear a mask and gloves.  

In Rec therapy today, Shannon said "we went on the roof, and I got to sneak into the art room real quick and I was flabbergasted with all the art and ideas. But we went outside and played a game and chilled in the sun. It was fantastic!!"

She also transferred to her chair and went to the gym and did the stem bike for 3 miles. New record for her. 

She had three hours to do nothing else, so she talked to her boyfriend Scott. She did a puzzle while she did speech therapy and her therapist  also had her read an article and then answer questions. They work on her cognitive skills a lot in speech. 

For OT she went to the gym and her PT helped her OT with transfers. Shannon prefers the way her PT does them. That's who I'm planning to have train me on transfers. I really don't want to drop or hurt her. 

And in art- she finished her space painting. Not top secret anymore: 

It's been a great couple of days, with mostly good news on the Shannon front. It's good to see her happier and feeling more comfortable with her accomplishments. I've definitely seen a difference in her mood lately. 

We have been busy, busy here. Mostly the outside progress is a visual. The basement is pretty much more mud work in the bedroom and a bit of sheetrock in the bathroom. Slow and steady. Steve, Lancer and Jake have been plugging away at the ramp and entrance. 

And the Walker's have nearly finished the larger entrance to our front path and redoing the existing pavers so they are level enough for a wheelchair. 

Shannon is doing fantastic, and I was sharing with a good friend today that we are feeling so blessed in all of her accomplishments. We would love for it to continue so Shannon can be home with us and prepared for her new adventure away from the hospital. Please pray for her endurance to continue to progress so that her blood pressure improves and she has the stamina for her daily routine. Pray for her spinal cord to continue healing, for her memory and cognitive thinking to keep moving forward, and for her outlook on things to continue to be positive. Thank you for all your help, both physically, and also in thought and prayer. We love you for all you do. 

Shannon's Meme today- she says this is totally her right now. She's so starving at midnight. 

This is how Shannon told me she felt today- given her newfound freedom to leave the tower, but also feeling like she didn't really have permission to be going out in the world (aka hospital)- 

Rapunzel : I CAN'T BELIEVE I DID THIS!

[nervous laughter]

Rapunzel : ... Mother would be so furious.

[later, sitting on a rock holding some water lilies]

Rapunzel : Well, that's okay! I mean, what she doesn't know won't kill her, right?

[rocking back and forth in a cave]

Rapunzel : Oh, my gosh... This would kill her!

[frolicking around]

Rapunzel : THIS IS SOOO FUUUUUN!

[standing on a tree branch, head up against the bark]

Rapunzel : ... I am a horrible daughter. I'm going back.

[cartwheeling]

Rapunzel : I am NEVER going back! Woo-hoo!

[facedown in the grass]

Rapunzel : I am a despicable human being!

[swinging around a tree]

Rapunzel : WOO-HOOO! BEST DAY EVER!

Disney's Tangled