We are over the big hump. So unexplicably the past few mornings, Lily has been throwing up- just to keep us on our toes. Maybe to keep us current. Perhaps she feels I didn't clean the couch or carpet thoroughly enough the last time we spilled something. At any rate-it gives us something to ponder- is it the mitotane, is it the swine flu, should we increase her feeds at night- I don't see a tail and she's not oinking. She went one night without any night tube feeding, and that is when the morning tummy expulsions began. So we, figured an empty tummy was an upset tummy and have been trying to find the lowest rate that keeps her tummy happy.
Personality wise- we are starting to see the old Lily. I forgot how funny she is. Just her demeanor, her facial expressions when she's telling you something. Early on in treatment, there was speculation that her personality was directly linked to her hair- that it was her power- when the hair fell out- the spunk left. Now it's coming back. The hair and the spunk. The first few times I saw the spark, it reduced me to tears. Those happy surprise tears that shock the hell outta you. The tears that represent a small piece of a broken heart, finding it's way home. A crack being mended. The other night Phil told her to do something, she snapped to attention and saluted him. Talk about being reduced to a puddle- she hasn't done that in months.
Since our public outings have been limited, they have forgotten how to behave when in such environment. Kiera had an afterschool talent show family night event. We braved it as a family. The experience left me disheartened and mortified. Even just going out for an hour or so still tuckers Lily out, so she wound down by the time the program started. Bella on the other hand just kept winding up. By the time Kiera actually performed- she was literally running around the cafeteria like an escaped monkey. For those who think I exaggerrate- I have it on film. Mostly because she kept running in front of me while I was trying to film Kiera. At the time I was tempted to run , grab her and drag her out of there kicking and screamin- that is what the good parent I used to be would have done. But Kiera had been talking about this talent show for weeks. She had invited neighbors, every night at dinner she showed us a new move. If I got up and wrangled Bella, it would have crushed her. So it was at that point I was committed. I was going to retrain her to behave. It's been really tough that at such a formative time in her development- behaviorally, emotionally, cognitively- her sister had cancer so she processed the beastly way Lily was behaving as normal and acceptable since mom and dad weren't doing anything about it. So now that is going to change.
It began with potty training and will end with acceptable public social behavior. We get to the cafeteria and Bella still has underpants on. I hadn't realized this until she stood in front of our bench and lifted her dress. She had put her waist through a leg opening and essentially mooned our row. I fixed the situation. She refused to sit, or cease and desist with the lifting of the dress. I rummaged through my bag to find a spare pair of pants and found one of Lily's. Then after about 12 trips to the bathroom, it was Kiera's turn to perform with her group. I had to move to the other side of the cafeteria to get a picture- and of course Lily and Bella followed me. Kiera was too cool for school and hardly smiled during the performance, but she later said she had fun there was just a lot of people there and it scared her. Understandable. Fortunately her sister was running around like an escaped monkey- so no one really could see Kiera. Phil and I later had much discussion as to how to fix this situation. We decided that the best course of action was to repeatedly take the little ones out to eat, until they learned to behave in public. Actually he took Friday off and we wanted to go to lunch- but we can write it off as a business expense if we labelled it as a training lunch. And what did we learn? If you supply toddlers with chopsticks and shredded cheese- they will sit still for quite some time. Lily actually did not want to leave as there were a dozen shreds still on her plate. If only I had taken chopsticks and cheese to the talent show....
Jen - This video is worth so much more than making Bella sit down. The film of Kiera, and the little monkey, is priceless. Love, Mom Deb
ReplyDelete