Tonight we colored eggs without Shannon, and it was a tug at my heart. I did three eggs and then didn't have any interest in more. Shannon texted while we were coloring, and so we FaceTimed with her. She was a little sad at first, but Lancer got her laughing and then we were all joking around with her. We played "see who can get Shannon to roll her eyes at them the most". I won. Shannon does this thing that I love. When she can't express herself enough with a good ol' eye roll, she lets her phone lay back so we see the ceiling. "You've been given the ceiling" might become a saying in our family. We shall see how long she uses it. It's fun to see her joke around with us when we talk to her. We've also been seeing a lot of a grey screen that says Paused in the middle. She just gives up on our bad lip reading and texts us what she's trying to say. It works :)
Today I got a lot of updates on Shannon, since Thursday is their Patient Care Conference day. She's been off the ventilator for longer periods of time each day. When we just spoke with her at 9, she was still off the vent, and had been since 10 this morning. Yesterday she was off for 9 hours. She still uses it all night. She's been doing a lot with PT and OT that have been wearing her out physically. So she's pretty tired at night. Her endurance is great though, and she's making a lot of progress. They are really focusing on her upper body so she can be more independent. We were told today that she most likely will come home with a regular wheel chair, not a power chair. That will help her to be more mobile since it's not such a big heavy chair.
Funny Story: This morning Shannon sent me a text. Our exchange went like this-
Mom
Yes
They just fed me
What? Fed you what?
Breakfast.
What food?
Pancakes, turkey bacon, orange juice
Did not!
Did too!
How?
With a fork and my mouth and a straw obviously
Shannon. You want me to believe that you went from a feeding tube in your stomach, to someone feeding you pancakes and bacon?
Yes!
I need proof! I'm trying to believe!!
Two days ago my therapist gave me pudding and yogurt
No one told me that. Photos!!
I tried to take a picture but he walked back in.
FaceTime me!!
He's gone now and took the tray, so you'll just have to believe my sticky syrupy lips and my pancake and bacon filled stomach!
This ended the exchange but we FaceTimed. She was trying to show me the bacon in her teeth, she was so serious about this breakfast feast she partook of! She showed me the empty table "where the tray of food used to be". We had to go since speech therapy was starting, but she texted me 20 mins later. She wanted to FaceTime to show me what she could do. I expected to hear her try to talk with her trach. Nope. Her ST was showing me that Shannon could eat oatmeal and bananas. I asked about the pancakes and bacon. She said "Shannon, did you tell her you ate that for breakfast?" Shannon confirmed. The therapist said she's the only one allowed to feed her at this point, and she definitely wasn't feeding her that. So, either Shannon had the best dream ever, or she was totally messing with us! She told me, Lancer and one of her sisters about the breakfast, and we were all convinced! Her mind is a squishy thing right now- so we aren't always sure what's what. Her memories are all jumbled at present, and sometimes its hard for her to know what's real memory and what isn't. BUT- she did eat oatmeal with bananas...and was quite pleased with herself! Baby steps.
I'm sure this weekend will be hard on all of us. We really love doing holidays as a family, and Shannon will be alone for it. I'm looking forward to her having a day off on Sunday so we can FaceTime her a lot and involve her as much as possible. The updates are expected to be slim again, as the regular staff won't be there to contact us. I'm super happy with her weekend therapist Meg though. She takes really good care of Shannon.
I know you are all focused on your families, and the difficulties surrounding us at present. It feels inadequate, to just keep thanking you for the love, prayers and concern you are showing to Shannon and our family. I just don't know what else to do or say that appropriately describes our gratitude, so for now it will have to suffice.
Please pray for Shannon to continue her progress in weening off the ventilator so she can breath on her own, that she can get her trach removed soon and be able to resume her therapy experiences outside of her room, that she will be free of other ailments and infections, and that she will feel loved, at peace, and happy this weekend. Also that she will get the rest her body needs to be ready for her therapies resuming next week.
Thank you, from the bottom of our hearts.
Yzma: *grunting and making "hit him on the head" motions with her broccoli*
Kronk: *confused* More.... broccoli? *remembers, jumps up* Oh! MY SPINACH PUFFS!!!!
Emperor's New Groove
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