Skip to main content

The last week of school

Things got so crazy that I didn't really mention much about the last couple weeks of school. Monday the 18th started out with an 8:30 am IEP meeting to go over Raya's kindergarten IEP. I was not as nervous going into that one as I had been going into the one before that because going into the IEP meeting, I at least knew she was GETTING an IEP. The meeting before, I had come prepared to argue my case for why she needed one and thankfully, didn't have to. It definitely helped having Donny with me at the IEP meeting too. No matter how many times I hear (and tell myself) that it's not us against them in IEP meetings, it still feels that way, so it was nice to have someone else on Team Us. Piper came too and she was very well behaved.

I still haven't read the whole IEP and I'm not going to until I'm good and ready. The most important thing is that the school recognized the needs that I explained to them and decided that Raya needs to have an aide for kindergarten. It will take some time to get everyone into a routine and train her aide (who has yet to be hired) but I am finally feeling comfortable with sending her to school for longer than 3 hours at a time. Her aide will assist with toileting at whatever level she needs assistance, sit with her in the cafeteria, take care of her feeding pump in the classroom, and be with her on the playground to keep her from overheating and from pulling her tube out. I walked out of the meeting breathing a huge sigh of relief and feeling like I can finally feel okay about sending her to school.

The rest of the day after the IEP meeting was incredibly productive. It was probably the most productive day we've had in a long time. After we got done at the meeting, I put Piper in bed for a nap until it was time to pick up Raya and Donny went to apply for a passport. After that, we took my car in to get desperately needed new tires, and to Costco. We grabbed some food on the way home and then I took Raya to the seating clinic to pick up her beautiful new medical stroller. Truth be told, I've been a little self-conscious about the fact that we got her one because to see her run around, it would be difficult for most people to understand why she needs one. Suffice it to say that there are times when she feels like crap and we still have to go places, or we're out and about and she gets too tired to keep walking, or her stomach hurts, or she starts to get too hot, or we have to go somewhere at night after the time when she needs her sleep meds (which we give on schedule regardless of where we are and what we're doing), so yeah. She is mostly able-bodied but she is too big for me to carry when she runs out of steam. We waited for 4 whole months from the time we ordered it so it was nice to finally have it come in. It is beautiful and it will be the last stroller she'll ever need. The weight limit is something like 100 lbs and it could easily fit a small teenager. It's pink and she loves it!

After I got back from picking up the stroller, we went and picked up my car from the tire place. I knew my old tires were awful and needed replaced but holy smokes, new tires feel SOOOO good! I got home from that just in time for the home health rep to come and exchange the crappy inaccurate feeding pump that had made Raya sick over the weekend by running all day without actually feeding her. Go figure, the new one did the exact same thing that night. It's so strange that we seem to have that problem around this time every year. I can't help but think it's related to the change in weather but in 5+ years, I haven't nailed it down yet.

That was one exhausting day but we got so much done! The next day was a little less busy. We had therapy and a little bit of down time to get ready for the next day. Raya's last day of school was Wednesday the 20th, and without realizing that was her last day, I had scheduled a well check for Piper for that day. She was supposed to have a swallow study done the day before but she had caught the cough that I had and I didn't want to do a swallow study when she was sick so we had rescheduled it. I never trust the length measurements when they just stretch the kid out and mark on the paper with a pen because it totally depends on the angle they hold the pen at, but girlfriend is long and skinny.
At 15 months, we're still waiting for her to decide she wants to walk and talk. She babbles a lot and is learning some new sounds, but she doesn't use any purposeful language yet. The closest she has come is saying "Hi" but she doesn't actually say hi to people, she just sometimes says it at random. I think she meowed yesterday when she picked up Raya's beanie baby cat though. Anyway, she is 19 lbs and 1 oz, so she's on the lean side. I can't remember what percentile that put her in but it was between the 10th and 25th, I think. I'm good with that. It's right on target for one of ours. We aren't concerned about the fact that she's not walking or talking yet either. Like the pediatrician put it, development happens on a bell curve. Somebody has to be on the slower side of the bell curve or else it wouldn't be a curve. Piper is just taking one for the team, I guess. :) She has always done things at a slower pace but not so slow that we're concerned, so she's just continuing her trend. We have rescheduled the swallow study a couple times now and I was considering rescheduling it again since she is still not completely over the cough, but after discussing it with some very smart mama friends, I decided to go ahead with it this time. She is teething right now, as we discovered at her well check. She's getting 4 molars all at once and finally got the 4th bottom tooth in the front. She's had 3 down there forEVER and the 4th one finally popped through. So lots of extra slobber makes it harder to get over the junkiness. In addition, swallowing incorrectly can make junkiness worse, so I think it's best to go ahead with the swallow study and see if they can see anything dysfunctional. She vomited for no good reason this afternoon and threw up chunks of strawberries she had eaten 5 hours earlier so that's not good either.

Moving on... Wednesday was Raya's last day of school so we had a tearful goodbye with her sweet and wonderful teacher and then had an awards ceremony in Cole's class that afternoon. Raya was really crabby but she liked hanging out with Cole at his desk during the awards and felt pretty special when she got to have one of the juice pouches at the end. She only had a sip or two but she LOVES when she can have what everybody else is having.

Thursday, we had an awards assembly for the 6th graders. I don't know what is wrong with the ventilation system in that room but it was hot and smelly as heck and the girls were not very patient. They were much happier when we got to come out of the room and they could actually see Ashtyn. It was her last event as an elementary schooler and now she is a big old middle schooler. Where did my baby go?!

I had given the kids the option of riding home with me or riding the bus and like every year before, they opted for the bus. Well, okay then! I anticipated some tears when they got off the bus because it happens every year, so the girls and I met them at the bus stop just in case they needed some lovin'. I think this was the least emotional they've been. They were more depressed on Wednesday. A couple of them got a little misty when they got off the bus and hugged me but they snapped out of it pretty quickly and were all smiles for the picture I took.

We came home and the kids had a snack and changed out of their school uniforms. For Ashtyn, it was the last time ever! No uniforms in middle school! She's pretty excited about that. After everybody was ready, we headed out to play for the afternoon. It was fun but I learned that sometimes, taking kids who are bummed about school being out for the summer, (i.e. miss their friends, sad they won't see their teachers again, etc.) to a place that requires patience and not getting upset when things don't go as well as you want them to is not a great combo.
(disclaimer: it was bright outside and I caught Ashtyn mid-blink)
We also ended up in a bay that was completely open on both sides, so it was very windy. Wind doesn't make for very good golf when you're already crappy golfers. I hit a couple of good ones and beat all the kids so that's all that really matters, right?
Left-handed boy living in a right-handed world
I was even nice enough to get them a little pizza to snack on.
Thankfully I had a couple of Dum-Dums in the diaper bag for Raya and Piper to snack on because they couldn't have the pizza and go figure, Raya actually wanted to eat something.

I think my favorite moment was at the beginning when our host showed us to our bay and then went to get the left handed golf clubs for Cole. He came back while I was getting all the kids organized and reminding them of the instructions. After he went over the safety rules and all of that, he offered to take a picture for us and then he said, "I just have to ask you, what's your secret? You brought 5 kids here by yourself!" I laughed and told him that the secret was that they're good kids. It was a nice compliment. They ARE good kids and I do enjoy spending time with them. There are times when I wouldn't attempt things like this by myself but the stars aligned that day and it worked for us.
Pretty darn good picture too! (and we don't look related to each other at all, do we)

I wanted to get the summer off to a good start so we spent the morning on Friday doing yard work. We trimmed all of the bushes in the front yard and bagged the clippings. It was an unseasonably comfortable day so it wasn't bad at all. The kids were pretty cooperative and helpful and we got it done pretty quickly.

Friday night, we grilled hamburgers and had corn on the cob. (or cob-on-the-corn according to Raya) There is a lot of negativity in the food world about corn these days, but for our family, corn is a huge blessing. It's a small and simple thing but everyone gets excited to have corn on the cob because ALL of us can eat it. We buy it in multiples of 7 because all 7 of us can eat it and it makes Raya so happy. The kids decided to eat outside. They crack me up when they decide to all sit on the tiny little porch by the door to the garage but I love when they do things like this. I love seeing them all happy together.

Saturday, one of my dear friends from high school was in town visiting some of her friends and they invited me to join them at the outlet mall that afternoon. It was so much fun seeing my friend and meeting her friends! Going clothes shopping is so much more pleasant when I have other people there telling me what to buy.

That evening, we decided to take the kids out for frozen yogurt to reward them for working hard in school and helping with the yard work and house work. I asked the kids working there if they knew which flavors were dairy-free (since their website said they had dairy-free flavors) and they told me all of them were dairy-free. Um, no. No they're not. They called the manager for me, who also did not know, and so the manager called the owners. After several minutes and a couple phone calls, they came back and said that the 4 fruit sorbet flavors were the only dairy-free ones. That's what I had assumed but I wanted to make sure before I fed any to my dairy-allergic and dairy protein intolerant girls. Once that was all cleared up, we sat down and had our dessert. It was another one of those awesome moments where there was something that all 7 of us could eat.
(Piper was on the floor in her car seat) I ended up feeding most of mine to Piper because the dairy-free flavors were lame. If I'm going to eat frozen yogurt, I want the cake batter flavor and the salted caramel flavor, not the fruity sorbets. *sigh* It's okay though, my dairy abstinence is for a good cause and Piper is a much healthier baby because of it so it's a small price to pay.

It was a whirlwind of a weekend but it was a really nice weekend. I sure do love and appreciate my little family!















Comments

  1. Just a few things:
    1.You have beautiful children
    2.It's not just about them being good kids, clearly they are well raised kids(so rare these days)
    3.Everything is suddenly dangerous these days isn't it? It's like there's some obscure study about everything. I had read about milk and dairy products being "bad" for people (I am talking about people without intolerance/allergies).Funny how generations survived on it with no ill effects right? Now I'm hearing corn is evil too? I know a lot more chemicals are used these days but the studies aren't talking about that, they are literally saying milk or cheese(or apparently corn) are very bad for people. I find the whole thing insane.So we should stop it with the dairy products and half the vegetables and do what? Eat KFC three times a week and McDonalds the remaining four days?(nothing wrong with an occasional snack I am talking about eating there multiple times a week).

    ReplyDelete

Post a Comment

All comments will require approval from blog owner prior to being published.

Popular Posts

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…

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…

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 …