Dinnertime tonight was awesome. I had completely slacked off on planning what we were going to have for dinner, so we decided at the last minute to have spaghetti. I was going to just give Raya some corn, grapes, and tortilla chips for dinner but then I remembered that I still had a package of corn pasta in the cupboard from before we had to stop letting her eat. I asked her if she wanted to eat noodles for dinner like the big kids were having and she got all excited and yelled, "YES! I LIKE NOODLES!" (because lately, she's either whispering or yelling...)
At first I planned on giving her the noodles plain, but then I decided to take it one step further and make her some "pasta sauce" out of corn. How's that for making good use of a single-ingredient food? Corn corn corn corn corn. Ha ha. All I did was heat up some frozen corn kernels and put them in the Magic Bullet blender with water, salt and a tiny sprinkle of pepper until it was pureed but slightly lumpy. (because let's face it, Magic Bullet blenders don't do anything beyond slightly lumpy) I used 1/3 C of water, 2/3 C of corn kernels, and a TINY pinch of salt. Actually, if I'm being honest, I had to dump the first batch and start over because I put WAYYYYYYY too much salt in it the first time around but the second time, it was perfect. Then I peeled 6 grapes and cut them in half. I think peeling the grapes took me the same amount of time that it took to make the rest of everything else we ate for dinner. I don't love peeling grapes, but whatever it takes! Here's her plate:
Can I just say how exciting it was for me to be able to serve her an actual MEAL?? It was awesome. What was even more awesome was how excited RAYA was when she saw me getting her plate ready and then when I put it down in front of her. She was so excited that I had to hold her plate while we had the blessing on the food so that she wouldn't start eating until after the prayer. She asked me a million questions about her food and kept saying things like, "Thank you for dinner, Mommy! I LOVE my noodles and corn sauce! These noodles are made out of corn. I'm allergic to wheat but I'ne not allergic to corn. This is so yummy! Can I eat the grapes too? These grapes stand up, see Mommy?" Part of the challenge of getting her to eat sometimes is getting her to stop talking long enough to do it. :)
We have to give her a lot of verbal cues still, but even that is SO much easier than it was even a few months ago because she's grown up so much and she understands what we mean when we tell her to chew the food between her back teeth or move the food with her tongue. She knows what it means when we tell her to swallow now. It used to be that whenever we'd tell her to swallow, she'd take one hand and wipe it across her mouth because she thought that's what swallowing was. :) She was a very happy girl at dinner tonight.
She definitely does better when there's an adult sitting at the table with her. Donny and I got up to start cleaning up the kitchen before the kids were done eating, and as soon as we stepped away from the table, they all started being crazy. As usual, Kaida and Raya were the last ones at the table. Kaida has a yucky cough and hasn't been feeling too good so she was being quiet, and Raya ended up eating more than I expected her to. Here's her plate after she finished:
Not too shabby, eh? :) I was VERY happy with how much she ate, and with how much she loved what she was eating. There's plenty left over so that's what she'll be eating tomorrow. She also drank a whole box of Splash today, albeit over the course of about 8 hours. Calories are calories though, and that's enough to eliminate one tube feed for the day, which is our current oral intake goal. Now that she's hitting it every few days, we'll start pushing for more consistency with it. I'm completely happy with how she's doing right now though, and it's nice to see her so happy about getting to eat again. We have a long way to go, but the progress is nice.
This afternoon, I was answering some questions on the Feeding Tube Awareness facebook page and a parent had asked for help with figuring out how to drain the gastric port on her child's makeshift GJ tube. She doesn't live in the US and Raya has a different kind of tube, so after some googling and improvising, I came up with a couple of ideas that might work for her. In the process, I needed to send her pictures of what I was talking about so that she'd understand since she's not familiar with the supplies I was suggesting to her. I tried to get Raya to help me but she had a very full belly and wasn't feeling good. She flopped down on the floor and said, "Mommy, I'm too tired! I want to lay down!" So I called in the reserves. Kaida, bless her heart, has always been a little jealous of the attention that Raya gets because of her G tube. She was the same way every time one of the older kids needed a nebulizer treatment. She was MORE than happy to oblige when I told her I needed her to pretend she had a tube for a minute so I could take her picture.
The things you do for your mother when she's trying to answer questions about draining g ports on makeshift GJ tubes and the kid that actually has a tube won't cooperate... :)
INTELLECTUAL PROPERTY NOTICE
*ALL information on this website is the intellectual property of the blog/website owner! Unauthorized use is prohibited. If you see something you'd like to repost or share, please email me and ask first. This includes but is not limited to all text, information, and photos on the blog. Thank you!*