I'm really impressed with the spinal cord injury program already. I think it's exactly the right place for Abby! It is extremely well known and she will be in the program for as long as she needs it! They do all kinds of outpatient therapies, including aquatic therapy (when she is able to do that). We will be continuing her therapy here after she goes home, because the level of therapy they can give here is just incomparable to anything she would get at home. It's a drive, but it's worth it! If you are interested in learning more about the program, go here: https://www.kennedykrieger.org/patient-care/patient-care-centers/international-center-spinal-cord-injury
She's started having some spasms today that have come on fast and furious. It's unusual for her to have them this far out from surgery, but nothing about a Shilla recovery is "usual!" She's been needing lots of meds pretty much around the clock and is waking up at night in pain. I'm still trying to decide what med regime is best. We have tried a few different things so far.
We have been concerned for a while now about Abby's swallowing. Eating has been extremely challenging and food has been getting stuck in her throat because her neck is hyperextended. She has also been choking on her medicines and drinks, which is making me nervous. After an evaluation today, the team decided that she's not safe with liquids or basically anything but puréed foods. She's now on a thickener that is making it a nectar consistency, which she does not like AT ALL. Her dinner tonight came puréed....puréed beef and puréed Mac and cheese. Needless to say, that got thrown in the trash! I'm going to have to talk to them tomorrow about finding her some things that will be appetizing and safe...cuz that beef was definitely not appetizing! She ate 6 bites of applesauce tonight. It sounds like we are increasing her feeds soon too, but I think the team is still figuring out what to do about that.
That news was sad to me because she had come so far with eating this year. She always regresses, but not like this. She can't even take her meds by mouth anymore. And it's the saddest because she wants to eat. It's not behavioral this time. It's just structural, and it's not safe. Ugh.
However, we did have several lovely bright spots in the day! At lunch time, Abby's wonderful teacher and one-on-one came to visit! Her one-on-one even "snuck in" some food for Abby to enjoy! (This was pre-swallow eval!). Abby absolutely adores both of them and I saw more smiles during their visit than I'd seen in a week! It was so good to see them and to know how loved Abby is. She is in the best hands!
This evening, The Bevards came to visit! They are always full of antics and laughs, and tonight didn't disappoint. They made Abby laugh a lot! Kids (except siblings) aren't allowed on the unit during cold and flu season, so we met them in the lobby. We ventured over to Hopkins and found an area of the cafeteria where we could spread out. Amy brought a craft for the kids to do, which everyone seemed to enjoy. Abby loved having them there and cried when they left.
Matt and Caleb are coming up tomorrow after Abby has a very full day of therapy. I know she will love the time with them. Visitors (who are healthy and have had flu shots!) make our day so much brighter!!