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Thursday, November 1, 2012


We had a Halloween party at church on Friday night. It was Donny's night to work late so the kids and I went to the party. Somehow I managed to only take 1 picture the whole evening and it was Raya with her kitty costume on. Really, it was just a headband with ears and some "whispers" on her cheeks, but it was good enough for her. She was a pretty cute kitty if I don't say so myself. :)

I'm very picky about chili so I volunteered to bring some because that way I knew I'd like it and that my kids would eat it, and that it wouldn't have anything in it that Raya couldn't have. She loved the chili and ate quite a few beans. She wouldn't eat any of the sauce or the hamburger but she likes whole beans. She was getting a feed most of the time that we were at the party so she was stuck in her stroller the whole time. Honestly I wouldn't have let her out anyway, there were WAY too many people around and I didn't have the energy to chase her around & keep her out of trouble. :) We've had to use Farrell bags to vent her while she's being fed lately and as I've mentioned before, they really only work when they're hung a couple feet above the stomach with the tubing connections below the stomach. Without an IV pole, this is difficult so by the time we headed outside for the trunk-or-treat part of the party, most of her formula was in the Farrell bag instead of in her stomach. I decided that instead of just being a tired mom for Halloween, I'd be an IV pole.

Side note, I also noticed that when you're at a Halloween party, nobody looks at you funny when you let your kid drink water out of a 60ml syringe. She prefers to drink out of the syringe and she doesn't choke as much when she does it so I let her. Not to mention that I didn't want her chili backwash in my water bottle. :)

I think it goes without saying that yesterday was a long, awful, miserable day for me. :) Today has been MUCH better though so don't worry, I'm back to my normal self. Like I said, there are a lot of good days, some bad ones, and some that are just plain ugly like yesterday was.

By the time evening rolled around, I was worn out and didn't care to cook dinner so I took Raya & went to Little Caesar's for a $5 pizza. Apparently the rest of the people within a 2 mile radius did too so there was a line out the door. After spending the entire day dealing with aggravating circumstances, I would have been doing nobody any favors to go stand in line with my darling little crabby redhead and wait for pizza so we went home. She cried all the way home because she wanted pizza. Not that I would have been able to let her have it anyway, but she was really upset. So was I. I wanted pizza. The big kids weren't happy either but they ate their microwaved frozen chicken without complaining.

When it was time to get Halloween costumes on, I couldn't find Raya's kitty ears ANYWHERE. For the party at the church, I had the ears but not her black pants. This time I had the black pants but not the ears, so I had to do her hair in little loopy ponytails and pretend they were ears. All she cared about was that I put "whispers" on her cheeks. This time I made sure to take pictures of all the kids in their costumes.
For the record, I'm glad Halloween is over just because I won't be hearing these two girls (who can't say the letter K & replace it with a T) talking about Raya being a "_itty" for Halloween anymore. I'm not typing the actual word because I don't want that on the blog but you catch my drift. My girlies need some speech therapy. :)

Hawkeye (Cole), Kitty (Raya), Sailor Moon (Ashtyn), and Jaguar (Kaida)

We had perfect weather for trick-or-treating. We've suffered through the hot part of the year and now we're remembering why we live in Arizona. :) All the kids had a good time but Raya was the most excited about it. She barreled her way up to every door, knocked until someone opened it, and then said "trick or treat!" as she stepped inside their doors. After they gave her candy, she'd yell, "Thank you!" and come back down the sidewalk to head to the next house. She LOVED it! I felt a little bad that she won't get to eat 99% of what she got but the important part was that she got to do what the big kids were doing and had a blast doing it. When we got home, we let the kids each pick 2 things to eat right then and then we put the rest away. In Mommy & Daddy's closet. So that Mommy can eat candy while she does homework & makes phone calls. Terrible, I know. :)

Unfortunately, Raya managed to down a Kit Kat and woke up later that night feeling awful. She was rolling around in her bed crying but not quite all the way awake or coherent. When I got her out of bed and took her in the living room she was beyond the point where she can communicate with us so we had to pin her down so I could plug in the extension tube and vent her stomach. I ended up dumping out the couple ounces of formula & chocolate goo that came out so that she didn't throw it up. I also checked the water volume in her G tube balloon because it was really, really loose and I thought maybe the balloon was leaking but it was normal. She was so far gone that Donny just had to put her in the shower to get her to calm down & be able to communicate again. We did her new bedtime routine with her and he took her back to bed. She cried for a few minutes but went back to sleep.

Today she felt better and her tube didn't seem so loose & floppy this morning. She was up to her usual mischief for most of the day but we all had a better day today than we did yesterday. She still managed to pull her G tube out again though. It's really getting ridiculous trying to keep a 2 year old tethered to an IV pole for an hour while she gets fed. If it wasn't for the Farrell bag she could just wear her backpack & be fine, but the Farrell bags don't work for her unless they're up high. This time she climbed onto the kitchen counter looking for marshmallows & candy and it must have come out when she got down. There was a puddle on the floor (i.e. the 137ml that she'd already been fed) and a trail of formula across the kitchen floor. She was standing next to her IV pole watching the formula leak out of the fully inflated G tube on the floor.

And for the record, I did NOT put that outfit together. That was all Raya. Once again, I pinned her down & put her G tube back in. I hate having to do it that way but it's the only way I can get it in because she fights me so much.

After the tube was back in, she sat in her high chair and ate Fritos and ice cubes until her feed was done. Then it was naptime so I gave her a bath and did her bedtime routine. Bless her soul, she took a nap! I was SO happy. She needed it and Kaida and I enjoyed our nice, quiet afternoon. :)

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