Kaida and I took the big kids & Raya to school and then we had a little breakfast date since it was our last free day before the end of the year. (*sniff sniff*) Kaida will be heading off to kindergarten in the fall and we won't get to have our 2 1/2 hours of peace & quiet together while the other kids are all at school. It has been fun to have some time alone with Kaida. She loves to be by herself. (in a good way) She is very independent and loves to be left to herself with her imagination. She can entertain herself for hours with just a few little toys that she acts out all kinds of scenes with. She also loves to watch movies & shows on Netflix. Her current favorite is Horseland but she also went through a stint where she watched "I'm Alive" every day after we took the kids to school. Then she had nightmares while she was taking a nap one day and we cut her off from that. :)
Anyway, I wanted to do something special with her before the kids were all out of school so she and I went to breakfast at our favorite breakfast spot. We got a waffle with sausage and split it, and ate outside in the beautiful weather.
That afternoon, Raya did dishes for approximately 4 hours. I don't know how she can stand to kneel on a chair for that long, but she is SO happy when she's playing in the sink! We haven't had a respite provider for 3 weeks now, so I needed something to keep her entertained while I did some work and attempted to study.
Getting Raya to sleep in her bed has been a total joke ever since we took the side off the crib and converted it to a toddler bed, and even more so since she was sick in March and couldn't sleep laying flat. In the interest of letting everybody else get sleep, we haven't been forcing the issue and figured we'll push it more during the summer. Monday night though, I sent her to bed in her room and when I came home from the grocery store, she was asleep on the floor with the lower half of her body in the hallway and the bedroom light on. Funny girl!
Oh, Tuesday. It was a long and exhausting day. We dropped the kids off at school that morning and I decided I'd be nice and let Raya go without her feeding pump. The preschoolers were doing their water day so I didn't want her to be left out of anything because she had her backpack on. She had drank about half of her box of Splash that morning and I had given her a syringe of formula before we left for school (which she fortunately did not vomit back up). Kaida and I came home so I could shower and get ready to be back at the school by 9:00 for the big kids' awards assemblies. We went back a few minutes early so we could go say hello to Raya while she played with her friends.
After we stopped to see Raya, we headed to the gym-a-café-torium for the awards assemblies. Somehow, I managed to miss getting a picture of Cole when he got his certificate for meeting his reading goal, but he got it and I was very proud of him. It was a close call for him. He loves to read but he gets so excited to see what happens next that he sometimes goes too fast and doesn't remember what he's read. That doesn't bode well when they have to take quizzes on all the books they read, so he's had to work really hard to get that certificate.
Ashtyn also got her reading certificate AND made the Principal's List for getting straight A's. We're so proud of her too! She is such a good girl and works hard at school. She is very creative and had a really good time doing the circuitry project they just did a few weeks ago. They had to make a house and build a circuit to light up their house. She decided she wanted to make the farm that I grew up on, so that's what she did. No project would be complete from our house unless it included some kind of medical supply, so of course she made the house out of a Neocate box. :)
Here she is with her teacher:
We got home and she wanted to do dishes again. I didn't want her to so I said no, and she had fits the rest of the afternoon because she wanted to do dishes. She'd be fine for a while and then remember that she wanted to do dishes and I kept telling her no, so she'd get mad again. As soon as the big kids got off the bus, I needed to leave to take Cole to his allergist appointment. I let Ashtyn and Kaida stay home so Ashtyn could practice her babysitting skills, and we took Raya with us. She didn't want to go, so she screamed and cried the whole way there. She didn't want to get out of the car, so she screamed and cried all the way into the doctor's office. It was extra special because it happened to be during the time that people come in to get allergy shots, so the waiting room was really full and every head turned in unison to stare at us as we came through the door. I won't bore with details but it was a pretty big meltdown. A lot of people kept trying not to stare and I have to say, I was pretty proud of myself. I totally kept my cool and very, very patiently rode it out. I blocked her from going outside when she tried to, I kept my voice calm and quiet when I told her she needed to pick her blanket up off the floor, I ignored the outbursts, and didn't back down on anything. There was a sweet older lady there that started talking to me and told me not to feel bad about how Raya was behaving. I really didn't feel bad, but I appreciated her kind gesture of being understanding towards us rather than being judgmental. Eventually, Raya curled up in a chair right by the door and noticed that her feet were dirty. I explained that her feet were dirty because she had not let me put her shoes on before we left the house, and I put her shoes on her. She wanted me to hold her, so I picked her up and walked back over to where Cole was quietly sitting in a chair behaving perfectly. (see, I'm not a bad mom!) She saw that there was a bucket of crayons (which I had pointed out to her earlier but she wasn't interested) and some coloring pages, and decided she wanted to color.
Finally, they called us back for Cole's appointment. The girl that was taking his vitals and doing his pulmonary function test kept going on and on about Raya's feeding tube. I get the impression that she hasn't been around too many. She kept telling me how sorry she was that Raya needs a feeding tube, and when she asked me what Raya eats and I told her she's only able to have formula right now, she commented on how sad that was. I always try to put a positive spin on it because I really do feel like it's mostly positive, but bless her heart, she made it hard with the way she kept carrying on about how sad it was. Really, it's okay. I promise. ♥
While we waited for Cole's appointment, he read us the ABCs of Asthma.
Wednesday was a fun day. Raya's preschool program was that morning so Kaida and I got there just in time to snag some front row seats. We ended up having to keep our feet up the whole time because there were ants and we had flip flops on. :) Raya was also in the front row. When the kids were all lined up, the teachers guided them in singing some songs they'd been practicing. It only took her about 2 minutes to go from this:
She didn't sing one word but she was pretty darn cute up there. :) Her hands were dancing on the ground while everybody else was singing.
She did do a few of the actions from the song about dinosaurs though. Funny enough, it was the part about the dinosaur eating. :)
By the time they got done, she was sitting on the sidewalk. She was tired. When the singing was over, she finally noticed that Kaida and I were there. :)
Here she is with her sweet teacher:
After the program, we headed into the classroom for treats. Raya was too tired to walk. I picked her up and stuck my hand in between her back and her backpack and realized that even though the ice pack was keeping her back cool, she was still really sweaty. Not sure what we're going to do when the weather heats up more other than stay inside with the air conditioning. :/ Inside her classroom, we got to watch a slide show of pictures from the school year and Raya showed us where she had written her name on the poster on the wall:
Kaida loved being in Raya's classroom. She got to sit at the table with Raya and her friends and have cupcake. Raya sat at the table too and ate a Dum-Dum.
She has LOVED preschool so much and loves all her little friends! It's so fun to hear her talk about her friends from school.
After we came home from preschool, I decided to let Raya wash dishes. I needed to get some homework done. :) Raya happily did dishes again for a couple hours. Then her extension tube got caught on the chair she was kneeling on and pulled her G tube out. Oops.
It was time to change it anyway so we just stuck a new one in. Thankfully, this time it went MUCH better than it had on Tuesday. Oh yeah, I forgot. Tuesday during a huge meltdown, her G tube got pulled out and putting it back in was a beast. I hate having to put it in when she's fighting me. Thankfully it went great on Wednesday.
After the big kids got home Wednesday, I took Cole to get his neck/face/head x-ray done to see if his adenoids are enlarged. Sometimes I forget how tough Raya is until I have to take one of the other kids to do something. Thank heavens it was just an x-ray because if anybody had come towards him with a needle, I think he would have flipped. When he realized they really were just taking a "picture" of his head, he was fine.
Later in the evening, I let the girls put lotion on my feet. Honest to goodness, they used at least half a bottle. My legs and feet have never been so soft.
Thursday was the last day of school, so of course the big kids dilly dallied and missed the bus. Monkeys. It turned out to be okay because I remembered that I had to go in the health office and pick up Cole's epipen anyway. After school, they were both in foul moods. Ashtyn came home bawling like she always does on the last day of school. Bless her heart, she gets sad when the school year ends. Cole was upset because Ashtyn came home with some cool toys that she got from school and he was jealous. And hot, tired, hungry, and cranky. I took them to a frozen yogurt place to perk them all up.
I brought Raya's pudding and let her get some sprinkles from the toppings bar to put in her pudding. She was pretty excited and now she won't eat the pudding unless it has sprinkles in it. Oops.
After we got back, we had my friend's 2 daughters over to play for a while. The older one is a few months older than Kaida and has a G tube. It never gets old listening to little kids talk to each other about their tubes. Raya and her new "tubie buddy" showed each other their tubes and had a funny little conversation about them. I absolutely LOVE that she has friends close by that have tubes like her. The kids played in the back yard with syringes and a bucket of water and soaked each other.
Later that night, Raya fell asleep standing up next to my desk.
We slept in. Donny didn't have to be at work until late in the afternoon and nobody had to be at school, so we had a nice, lazy morning. I took Raya to OT and feeding therapy, and then came home and tried to study. The kids ate pancakes for dinner and watched a few episodes of Phineas and Ferb and then went to bed. I tried to put Raya in her bed when I was ready to go to bed and she woke up and got upset that I was trying to carry her out of the living room. I told her I was going to bed and she got mad. She followed me into my room crying but I didn't back down. (see, I said we'd push her more during the summer) I got in bed and went to sleep and she finally gave up and slept on the floor next to my bed. It was the best night's sleep I've had in a while.
Today, the kids spent a lot of time pulling weeds and cleaning. Cole actually asked me for more jobs to do this morning, bless his little soul. He's a good worker. In the afternoon, I really REALLY needed some peace & quiet so I could finish the essays I had to write, so Donny took all 4 of the kids to the library and to the store. It was SO nice. I got my homework done, we had dinner, the kids watched one of the movies they checked out from the library, and everybody is sleeping peacefully. Oh, and the best news of the day is that Raya's new respite provider is starting tomorrow! Happy summer!