More of the Same with a Visit from Jeanne and Mary Thrown In

It has been a lot more of the same - school, therapy, play, struggles with bedtime, eating more bites, bolus feeds, not much change on potty training, etc...

Sunday, we had cousins Jeanne and Mary over for brunch along with Aunt Tiffany, Jacob and Michael, Grandma A and Grandma M. Jeanne and Mary are retired and live in California and are on their way to Whidbey Island, Washington where they have some property and will spend most of their summer this year. It is always good to see them and I'm glad they were able to come.

Jeanne and Mary brought some gifts for the kids. The girls both got stuffed animals, which they have been dragging back and forth between the playroom and bedroom. If they are sleeping they want their animals in bed and if they are playing then they want their animals in the playroom with them. This morning, Sarah even wanted her stuffed animal to eat breakfast with her. I told her she needed to take it to the playroom and then come eat, because I didn't want it to get dirty from breakfast and then have to be washed.

Grandma A brought out several outfits for both of the girls, including Dora nightgowns for each of them. She had found a sale on clothes and couldn't help herself. The girls wanted to wear their Dora nightgowns to bed that night. In Rebekah's attempts to not go to sleep like a good girl, she decided that she needed a new diaper. She took hers off and got several more out of the drawer and tried to put one on. However, she doesn't have the hang of putting on diapers and she ended up peeing all over the bed, which included her nightgown and her Dora blanket. Boy was she upset when she had to get new jammies and couldn't have her Dora blanket because it needed washed. Tough lessons for a little girl to learn.

Rebekah has been asking for tummy drinks and saying "all done" which I think she means that her tummy is empty (she often uses "all done" to mean empty). I had figured that we needed to wait at least 2 hours between bolus feeds, so that she had time to digest it. But she has been asking for tummy drinks ans saying all done at an hour fifteen or an hour and a half. After a couple of days of that (where she was being pretty consistent), I started to believe that she might have an empty tummy and really did want food (and wasn't just trying to get out of whatever Mommy had asked her to do).

So when she was asking for tummy drinks at bed time and it was an hour and a half or so after her last bolus feed, I checked to see what was left in her tummy (with the G-Tube, I can do that). Low and behold, not a drop was left in her tummy. She probably was hungry. So, I gave her another bolus feed. Now I know that I don't have to wait 2 hours between feeds. That can allow me to get a little more into her and maybe add to her weight a little.

I am still trying hard to encourage her to eat, so I don't want to give her a bolus feed shortly before a meal or a snack. Most often, when she says she is hungry like that, I'll offer her a snack first and then she can have tummy drinks. All in all, I don't like the fact that she needs the tube feeds, but I'm very happy in how much she is eating and how we continue to see improvement so I'm not "down in the dumps" about it.

Bed time continues to be difficult. Last night, they lost "Dora" privileges (as in, no Dora on TV). They threw pillows and blankets and stuffed animals on the floor and they lost those too. I did agree to give them back a pillow each and put them back in pillow cases for them, but they didn't get their blankets or stuffed animals back. Rebekah was ok with having her sheet and regular blanket on her, but Sarah wanted nothing to do with it and laid in bed without any covers on. Maybe, they will start to figure out that throwing things onto the floor is not ok. (And most of it is intentional.)

Rebekah wants so much to be a big girl. Today, she picked out her own clothes. She decided that she wanted a Daddy Fire shirt (dark blue Fire Department shirt in her size), khaki pants and her pink Easter sweater (because she was cold). Quite a combination, but since that is what she wanted to wear that is what she is wearing. Besides, it is a stay at home day, so no one has to see her...