Skip to main content

Week 1 of kindergarten: DONE!

The sun was very bright, hence the squinty faces and red eyes.

Raya's first week of kindergarten is in the history books! Due to a lot of hard work by a lot of people, everything went about as smoothly as it could have.
Sunday afternoon, we packed everyone's backpacks with the rest of the school supplies that I had bought late Saturday evening. Normally it would give me anxiety to wait that long but it came down to a choice between taking a bunch of kids school shopping with me in the middle of the day when everybody else and their kids are school shopping, or waiting until Saturday evening to do it by myself. One by one, I sat down with each kid and checked off everything on their lists. (Except for the Kleenex. Had I bought the number of boxes of Kleenex requested by each kid's list, we would have been carting about 15 boxes of Kleenex to school on Monday. Ain't nobody got time fo' dat.) Sunday evening, we continued our tradition of having Donny give the kids father's blessings to help prepare them for the upcoming school year. 

Monday morning went pretty smoothly. The elementary school starts 40 minutes before the middle school, so we got the younger kids ready to go, had family prayer, and I took them to school, and then Donny took Ashtyn to school when it was time for her to start. It took some coaxing to get my too-cool 5th grader to ride to school with me instead of on the bus. Meaning I had to pull out the "because I'm the mom and I said so" card. He even asked me to drop him off before we got to the parking lot so he didn't have to walk with us. HA. There was nowhere to park since a lot of parents walk their kids to class on the first day, so we had to park really far away and then we lucked out that the teacher on bus duty hadn't locked the gate yet so we sneaked in that gate instead of having to walk all the way to the front of the school. I waved to Cole and sent him off to his classroom, and then we met Kaida's class halfway between the playground and classroom. She's not too cool to hug her mom in public yet so she gave me a big hug, gave Raya a big hug, and happily joined her class on the walk to the classroom. She LOVES school! Once we had deposited the first 2 kids, Raya and I headed to her classroom. The kindergarten wing is madness on the first day of school. I walked her into her classroom and helped her get all of her supplies onto her desk. We were introduced to Raya's aide and I told her a few quick things but pretty much all the kids' parents had walked them to class too so it was really packed and chaotic. I snapped a picture of her at her desk and then had to go to the health office to drop off medications and fill out forms.

I thought the trip to the office would take me about 5 minutes but it ended up being more like 30. I had 3 medications for Cole and 2 for Raya and each one required its own form. I try to make things as easy as possible on the health aide, especially on the first day of school. Her office is complete chaos pretty much the whole first week and I didn't want to add to it.

I spent most of the morning talking to her aide and giving her a bit of background on Raya. We got to go on a tour of the school so that the kindergartners would know what to do when it was time for lunch, and where to line up in the morning. After that, it was lunch time. Raya gets to sit at the peanut-free table. I kind of have mixed feelings about segregating kids because of a medical condition but for now it's the best thing for her. We have a really good plan worked out for lunchtime at school that I think will help improve her eating habits (i.e. help her develop a habit of eating). Her aide has done great with it all week so far and I think it's going to be a great system for us, even if it needs tweaking down the road a bit. 

After lunch, the kids got to play on the playground for a few minutes. Raya was doing great up until that point as far as tolerating the heat. I don't know what the temperature was during lunch recess but when I took her home at around 2:00, it was 110 degrees, so it was probably at least 105 at lunchtime. She did great until it was time to line up. Being the first day of school, sorting out 3 kindergarten classes proved to be a bit of a challenge. Not all of the kids knew their teachers' names yet, and some of them were off in la-la land, so it was like herding cats trying to get them lined up in the right place. We ended up standing outside in the sun for about 10 minutes trying to get all 27 of the kids together. After about 5 minutes, Raya walked over to where I was standing and leaned on my legs and told me she was "so super tired" and her face was getting red and splotchy. I took her backpack off and carried it for her for a few minutes and showed her aide that that's what she needed to be on the lookout for when Raya is outside, and that when she gets like that, she needs to go in and cool off ASAP. After everybody was gathered up, it was time for art class. I thought the regular classroom was a zoo but art class was much more difficult. The desks and chairs are made for big kids, not kindergarteners and they were still a little hyped up from lunch and recess. I think the art teacher was tired by the time we left his classroom 45 minutes later.

After art class, we headed back to the classroom. The first day is always crazy but they still managed to do a couple worksheets and learn the school and classroom rules. I hadn't necessarily planned on staying the whole day but it was for the best that I did. It gave me an opportunity to get a good feel for how the flow of their day will go, which helped me decide on the best way to go for her feed schedule and bathroom schedule. Before Monday, I'd had things planned out one way, but once I spent a day at school, I realized that it would be better to do them differently so I'm glad I stayed. I pulled her out of class at 1:30 as planned, and the timing of that worked out perfectly because that's when the class leaves for afternoon recess and snack. They walk past the office on the way to the playground so she can walk with them and then meet me in the office. She was a little bummed to not be going to the playground with her class but decided that was okay because she was really tired and her legs and feet were tired and hurting by then. We dropped off some papers to Kaida that I hadn't finished filling out by the morning and then stopped by the health office. That was when I found out about the existence of the "health care plan" that apparently is redone every year and has been in Raya's file every year. I had never been told that one existed and always just assumed that everyone was going off of the information I had added to the IEP. Turns out that someone from the district (a respiratory therapist whom we have met once. Ever.) writes all the care plans for the kids who need them and wrote Raya's based off of information from 2 years ago without contacting me or anyone else to ask for updated information. That was a bit of a shocker, especially considering all the legwork I had done at the end of the year last year to get signatures and forms filled out BEFORE the IEP meeting. I am still baffled as to how that person could have thought it was okay to use 2 year old information without contacting anyone and asking for updates but the information has now been sent and hopefully the new plan will be accurate. After that, we left the school for the day. She was thrilled as could be to officially be a kindergartener and couldn't wait to go back on Tuesday!

One thing I realized while I was there was that it was time for me to let go of control a little bit and teach them how to disconnect and reconnect Raya's pump. In the past, if she needed feeds at school, I just had the pump programmed on the interval setting and had them leave her connected to it the whole 3 hours. I had planned on having the aide disconnect her after her second feed of the day but I hadn't planned on having her disconnected between the first and second feeds. After going over the schedules though, I realized that that's what needs to be done so I took a deep breath and turned that responsibility over to the aide and health aide. I went in Tuesday morning and gave the health aide, Raya's aide, and 2 other aides the rundown of how to connect and disconnect feeds. I don't think most people can really comprehend how difficult it is to turn that responsibility over to someone else. In all of her life, I can think of 2 people aside from Donny and me who have ever connected and disconnected Raya's feeds outside of the hospital. I have always felt like this was a situation where the saying "too many cooks spoil the broth" applies, meaning that I prefer to have as few people as possible involved in touching her pump and tube. I knew eventually we'd have to let other people help with it and I could have just opted to have them leave her connected for the morning, but as long as the instructions I gave are followed, this is the best thing for her. I heard that she was quite helpful at telling them what to do when they were taking care of her pump the rest of the week so I think they'll manage. :)

Tuesday was one step closer to independence. I still had to park and walk her to class, but I walked her to where her class was lining up and then I left. I didn't go to the classroom or anything. Then I had to head home so I could take Ashtyn to school. Let the record show that no tears were shed when I dropped my baby off to her second day of JUNIOR HIGH. I am way too young to have a kid in 7th grade, I tell ya. 

I did have to come back about an hour later so I could meet with the aides, but that was all the contact I had with her that day. She looks WAYYYY too grown up in her cute little uniforms!
bright sunlight: 1, Raya: 0
Their school has a pretty liberal uniform policy, thank goodness. She was NOT excited about the clothing options but she's getting used to it. She made me laugh so hard after school. As we were pulling into the garage, she asked me, "I can wear my collar how I want when I'm not at school, right?" I told her she could and she said, "Oh good. I like it this way because this is like a vampire."

Wednesday morning, I didn't even go past the gate. I told Kaida that it was going to be her job to make sure that Raya got to the right place to line up. I fixed Raya's pump backpack, put her school backpack over the top of it, and sent them off through the gate. Watching them walk away hand-in-hand melted my heart. 
I walked over to the other gate so I could see that they got where they needed to go and watched them walk up to Raya's line. Kaida gave her a big hug and then went to line up with her class. I walked away with a smile on my face, knowing that everybody was where they needed to be, and feeling a little bit giddy over the prospect of having a peaceful, quiet day at home with Piper. I think Piper was pretty happy about it too.

Raya hit an exciting milestone on Wednesday. When she came home from school, she had managed to drink more than half of her water! Within another couple of hours, she had finished the whole bottle. Eight ounces of water in one day was a new record for her and I made sure to tell her how proud I was of her and what a great job she did. We also sent the picture to her feeding therapist who was about as excited as I was.

Wednesday night was a little rough. She went to sleep at the usual time but woke up at 10:30 and was upset because she had fallen asleep without snuggling with me first. I told her we could snuggle on the couch for a little bit since I knew her pump would be going off before too long and I'd need to get up and turn it off anyway. We laid down on the couch and I fell asleep. At 3:45 am, I woke up to find that she was wide awake and watching Jake and the Neverland Pirates on Netflix. She didn't know how many episodes she had watched and was not happy with me when I turned it off. I gave her a second dose of her sleep meds and got her bedded down on the floor next to my bed, hoping that she would get to sleep a little bit longer that way. She still woke up before 7:00 Thursday morning and was a total zombie. I would not have been surprised to have gotten a phone call that she was asleep and I needed to come pick her up. They said she was pretty subdued all day but she stayed awake. She also stayed awake on the drive to feeding therapy after school, and the drive home from feeding therapy. I really do not understand how her body can keep going and not ever slow down and relax enough for her to just fall asleep.

Friday morning after the kids had all been dropped off at school, Piper and I went to our last summer movie. It was kind of funny taking a 17 month old to a movie, but we had fun. She could care less about the movie. She was only interested in the popcorn and sitting in a big kid seat all by herself. We left a few minutes early but she lasted a lot longer than I expected her to. 

We picked her up Friday afternoon and she was bouncing off the walls but very happy. She was so proud of her construction paper mouse headband!

And I tried my best to pretend that I didn't hear the secretary call the maintenance guy on the walkie-talkie and ask him to go clean up after the boy in Raya's class that vomited about 5 minutes before Raya came to the office.  {hashtag: Mommy is a germophobe}

Overall, our week went well. I am feeling 100% justified in our decision to pull her out early every day, based on how she did once she got home each day. She does a great job of holding herself together while she's at school and then falls apart when she comes home, but she did a little better than I thought she might, so I think what we're doing is perfect for her. She kind of wore me out over the weekend. She was releasing all the pent-up energy she'd been holding in all week. She literally talked all day on Saturday. Mostly to herself and her toys. She's been much more emotional all week than she normally is, which I'm sure is due to the transition, but she asked me several times today when she could go back to kindergarten so I think she still liked it. :)


Popular Posts

Sensory Processing Disorder: How to Make a Weighted Blanket

Lately I've been toying with the idea of making Raya a weighted blanket. She loves heavy things and has a lot of sensory seeking behaviors in regards to proprioception. Translation: she craves sensory input that helps her to gain awareness of where her body is in space, and it takes stronger than average input for her to get the feedback that her body is craving. (or at least that's how I understand it :) She seeks out "heavy work" activities, like carrying heavy things, pushing heavy things around on the floor (chairs, full laundry baskets, etc), and anything that gives heavy resistance to her muscles and joints. Lucky for us, carrying her backpack is a good heavy work activity because the poor kid gets to do that for a few hours a day. :)
The idea behind a weighted blanket and other heavy work activities is that when the child gains greater body awareness through proprioceptive input, the nervous system can be calmed and the need for constant fidgiting, moving, jump…

Adhesives Part 1: Adhesives & Taping Techniques for NG tubes

This series has been a long time in the making. Back when Raya got her NG tube, I had no idea there were so many different adhesives on the market. At the hospital, they had used some kind of fabric tape in a box that had to be cut with scissors and that was the ONLY thing we accidentally left at the hospital. Raya caught her little pinky finger on the tube a couple days after we got home and the only medical tape I had ended up bringing home was Durapore. This tape is VERY sticky, very strong, and definitely not the best option for the tender little cheek of a 2 month old baby. A couple days later, we went to the GI doctor and the nurse saw the tape and told me that Duoderm would be much gentler on her skin and she gave me a couple of 6x6 sheets to try out.
That was the beginning of our trial-and-error process of figuring out which types of adhesives were better for all of the different things we used them for. This will of course NOT be an exhaustive review of every adhesive out the…

Feeding Tube Terminology: G tube words

One of the many things I didn't have a clue about before Raya got her G tube was the fact that there are LOTS of different kinds of G tubes, all with similar but different features & functions. Some of the terminology that was tossed around in the beginning was very confusing. When I met with the surgeon to pick out a button for when Raya's initial tube was ready to be changed, they pulled a bunch of tubes out of a cupboard, put them down on the table in front of me and said, "What kind do you want?" I had NO idea what to pick, all I knew was that anything would be better than what we had at that point.

Here are a few things I wish someone could have explained to me before Raya got a G tube:

1. What the heck does PEG mean?
PEG stands for percutaneous endoscopic gastrostomy. In other words, a gastrostomy tube is placed through the abdominal wall using an endoscope to visually guide the surgeon to the best location to place the tube. The term PEG is used to refer to …