It seems like the really big improvements come after the biggest struggles. Jenny looked and felt so good today, maybe since she slept almost 8 hours last night. Her spasms are gone and she was working hard in therapies today. Jenny has resisited eating in the past since she could not do it perfectly. Well, she figured out how to finally stick out her tongue (as she is asked to do in most exams) last night, so she practiced all night and the next day. Unfortunately, there is a bit of a different motion needed for eating, but she must have assumed she had control of the tongue and that was all she required. Jenny was demanding to eat, and she was specific. She had a finely cut soft taco, part of 2 puddings, and an entire cup of yogurt. Since she was daring, we tried spooning liquids. She was perfect at it until I poured it in her mouth with a cup- which was a bit too optimistic. She was amazing.
I also picked up a massage table to allow Jenny to lay on her belly since the table has a hole for the face (and thus her trache). She was thrilled to let her back feel the air again. I gave her a massage and then let her lay there until she was ready to return to her back. I think I just unknowlingly added 30 minutes to our already busy daily routine. Finally, Sophia has been hanging out with Jenny much more lately by just talking to her and being silly. Sophia is also her mom’s biggest advocate when we forget to put Jenny’s glasses back on. Anyhow, Sophia came up to me with a T-vent (a humidifier device that is 1 1/2 inches and fits on the end of the trache in a t-shape) and asked me to put it on her. I stuck it on Sophia with medical tape and showed Jenny. Of course Jenny got a huge laugh, but then Sophia probably did the sweetest thing someone could do for Jenny. Sophia said, “Look at what I’m wearing mom- I’m beautiful.”