April 24, 2020

You guys! Today was an amazing day, because, I literally spent the ENTIRE DAY with Shannon!!! She is a complicated woman, and there's a lot to learn about her, so the family training has begun. This was an observation day, which basically means just hanging out in almost hazmat gear watching Shannon and her therapist's banter back and forth in the most sassy of ways. And- I got my very own N95 Mask- which we all know is a hot commodity right now-and a fancy splash guard to....keep...heaven only knows why I need a splash guard. Nothing is splashing around in that room unless Shannon slurps some soda while someone is cracking a joke (it could happen). They are such a hot commodity, I have to reuse the same ones every time I go to in for training, and they have to live at the hospital in a labeled paper bag. I even had to get them checked out of the inventory list. #feelingspecial

I learned a lot about Shannon's new daily life. First of all........ I need this cool lift, and a person who gets me out of bed every day. I mean, a hammock chair that can lift  me from my bed to a chair? I don't need it, but I also don't need chocolate- that never stops me from enjoying it though! Shannon's nurse "Sleepy" is my new favorite nurse at her hospital. She's hilarious, and fantastic to Shannon :)

Occupational Therapy looked like this today. Dog petting, and dog toy throwing. Nigel is a sweetheart, however; Shannon asked me to bring her stuffed animal goat Gerald home, because Nigel loves him and gives him slobbery, teethy, kisses. We don't want Gerald to die!

It's a lot of work for Shannon to just be sitting on the sofa. Her core muscles are not very strong, and she aches a lot just sitting there. Then the therapy begins, with her trying to lean forward to reach the toy and take it from Nigel. It's really difficult for her, and Shannon doesn't enjoy feeling like she's going to fall over when she leans. She has a long road ahead to get those muscles back to a place where she can sit and lean forward, or even sit with the stability to be on her own. But she's making progress and doing better each day. 

Everyone is tired after therapy, even Nigel. Shannon asked her speech therapist to bring her a banana from the cafeteria this morning, and wouldn't tell us why. When she was done playing with Nigel, she gave him the banana. He apparently loves them! 

Next was Physical Therapy. I absolutely love her therapist Rachael. She has this amazing mask that looks like a duck bill, and Shannon gives her crap about it. At one point when she was helping Shannon do some shoulder stretches, she was leaning over her and asked Shannon how she feels. Shannon said "I feel like there's a duck bill on my head" :D   

She was hooked up to the electrodes again today and rode the bike. She got up to 100% muscle use a lot faster than last time, and peddled for two miles. The Shannon on the bike screen is wearing a bike helmet that Rachael added to the program because Shannon mentioned she wasn't wearing one previously. 

Then we hung out together and had Wawa sandwiches. I sat seven feel away from Shannon (going the extra mile here to protect my girl) so I could take off my protective gear to eat. 

Recreational Therapy was a game of checkers- which Shannon won! 

Ever since Shannon could express her opinion after her accident, she has complained about how awful her nails look, so I gave her a manicure before I headed back home. 

 Now they look so pretty!

It was really good to be able to meet all the people that I talk to on the phone, to put some masked faces to their voices. The funny part was, I recognized their voices and still don't actually know what they look like! It was also very enlightening to see Shannon in person doing her therapies. Hearing how she's doing and actually seeing how she's doing are totally different things. I learned a lot about what her care will be like when she comes home. This is going to definitely be a family affair to support her needs while she continues her therapies at home, and then through outpatient care. 

On the home front- we are in demo mode. Happily, I was gone today and missed the sultry sounds of this happening in the basement. 

We don't like where they plumbed the bathroom when the house was built, so we are moving it to a new location. I'm learning that nothing right now is supposed to be easy, and that having a positive attitude and learning to just roll with whatever punches come our way is the only way to survive our current situation.

It's a work in progress. We still have 5 weeks. I am POSITIVE we might probably maybe almost have it done in time. If we are lucky. 

Also, my car is almost done with the repairs, and since it was there already, it's having a needed oil change and state inspection. We shall see how much good Ol' Rob loves us when we get the bill. I heard new tires and possibly brakes were needed. Of course. 

Shannon is still in need of so many prayers. Please pray for her to be able to strengthen her core and neck muscles, to have her blood pressure regulate so she can do her therapies better, that her spinal cord will make the needed connections, that her respiratory system will improve so she can get her trach removed, and that she will have the energy and stamina for her therapies. Thank you :)

Meme of the day:

This Disney song looks a bit like Shannon's days. Feel free to sing it! 

7 AM, the usual morning lineup:

Start on the chores and sweep 'til the floor's all clean

Polish and wax, do laundry, and mop and shine up

Sweep again, and by then it's like 7:15.

And so I'll read a book

Or maybe two or three

I'll add a few new paintings to my gallery

I'll play guitar and knit

And cook and basically

Just wonder when will my life begin?

Then after lunch it's puzzles and darts and baking

Paper mache, a bit of ballet and chess

Pottery and ventriloquy, candle making

Then I'll stretch, maybe sketch, take a climb,

Sew a dress!

And I'll reread the books

If I have time to spare

I'll paint the walls some more,

I'm sure there's room somewhere.

And then I'll brush and brush,

and brush and brush my hair

Stuck in the same place I've always been.

And I'll keep wonderin' and wonderin'

And wonderin' and wonderin'

When will my life begin?

Rapunzel- Disney's Tangled