Skip to main content

Fall break

Today was the last day of Fall Break for our kiddos. I know, I know, what the heck is fall break?? That's what I said too when I first moved to this state. Then once I had kids in school, I soon understood the value of having a week long (plus a day) break in October once the weather has cooled down to the low 90s. It's a beautiful thing.

I am not the most fun mom in the world. To be honest, I spent a lot of our fall break making phone calls to insurance companies, doctors' offices, and other providers. I also spent a lot of time on the computer and trying to catch up on things that I got behind on when we spent 2 impromptu days at the hospital the week before. There was a lot of housework that needed to be done, a couple of therapy appointments, and all of the kids had different things they needed to practice (i.e. piano, karate, etc.). Oh, and I spent a lot of time awake in the middle of the night too, for one reason or another. Mostly to connect a Farrell bag to a yucky, bile-filled stomach, or to make a pump stop beeping, and then I couldn't go back to sleep.

Wednesday afternoon, the kids all had appointments to get their teeth cleaned. The older 3 kids did fabulous, as always. No concerns with anybody's teeth. Then there was Raya. Remember how I said that medical trauma always has fallout that carries over into multiple aspects of her life? Yeah. It was her worst dental cleaning yet. Even her very first one when she was 2 went better than this. It was a CLASSIC case of how Raya copes with situations that make her uncomfortable. First, she distracts herself by finding toys to play with. If there aren't any toys, she uses her hands and pretends they're people and makes them walk, talk, etc. She completely tunes out the rest of the world. Then when someone does attempt to engage her, it takes several times talking to her to get her to listen. In this case, she ignored me because I was telling her it was her turn to lay on the little table to get her teeth cleaned. When she didn't show any intention to move towards the table, I moved towards her. She turned her back to me. I picked her up and carried her the whole 3 feet to the table and attempted to lay her on it, at which point she clung to me like a baby koala. I couldn't peel her off of me no matter how hard I tried or what I said to her.

When it quickly became clear that we would not be able to do a normal cleaning, I sat on a chair with her facing me and laid her back onto the hygienist's lap. She fought us on that too but she did eventually relax enough that we could do it. She squeezed my hands the whole time, made a lot of jerky/fidgety motions, made a lot of unhappy sounds, clamped her teeth shut on the toothbrush several times, and gagged a few times. The hygienist did the best she could but they're always afraid to do much when she's not feeling cooperative. I certainly understood why Raya was acting the way she was considering the crappy week she'd had the week before, but it was still really frustrating and disappointing to see her struggle so much with something as simple as getting her teeth cleaned. She has not been THAT orally defensive in probably over a year, and has never had as difficult a time with a teeth cleaning as she did this time. Last time, she was even able to have them use the regular spinning brush thing (dental terminology is not my thing) and she did bitewing x-rays like it was no big deal. From that to this was really sad to see.
This is the kind of thing that makes me worry about what will happen when she gets reevaluated for her IEP. Her fate is in the hands of the people doing the evaluations, and if they could only see how difficult even mundane, routine things can be for her when she is not feeling well, they wouldn't be trying to scare me by saying things like, "We'll do the reevaluation so we can determine IF she's still eligible for services." *deep breaths*

On a lighter note, the kids all had a lovely time with the fake mustaches they got from the little prize machine at the dentist's office.

We did go to a birthday party on Thursday morning at a park. It had been raining off & on the night before and that morning, so the temperature was perfect and it felt amazing outside. Raya wasn't feeling very good and spent a lot of time off by herself digging in the damp sand. Then she would come up to me and shake her hands at me over and over again but wouldn't say a word. She was trying to tell me (without talking) that she wanted the sand off of her. I'd get the sand off and she would say a quiet "thank you," hug my leg, and then go dig in the sand again and repeat the whole process. I just can't even fully put into words how different she is right now than her usual self.

Friday we decided to get out of the house and get together with some good friends at a park. Raya was feeling pretty good when we left so I only brought a stroller for Piper and figured on Raya walking. She started out fine.
I mean really, does it get any cuter than that? I think not. :) I didn't even tell them to hold hands. We sat in the shade at the picnic tables and had lunch, and then the kids ran off to play. Well, except for the tweenies. Ashtyn and her BFF, Sky, had their own little picnic off by themselves. They are just too cute.

It ended up being a bit warmer out than we had anticipated. The big kids played for a while but Raya didn't last very long. She had been playing but then a boy pushed her out of his way when she was trying to get on something and knocked her down. That hurt her feelings and she was already tired and hot, so she was just done after that. She came and laid her head down on my lap for a while and cried for a few minutes. Piper spent most of the time relaxing in the stroller and gnawing on a grape in her mesh feeder. Girlfriend loves her food!

When it was time to go, Raya cried and refused to walk. It was kind of a long walk to the car, so I didn't want to have any of the other kids carry Piper, there was a lot of uphill and downhill between the playground and the car so I didn't really want them pushing the stroller either. We ended up improvising and had Raya get in the stroller and squeezed Piper in next to her. Piper wasn't happy about it at first but once we started moving, she was fine. Raya did a good job holding onto her and didn't puke, and we all made it to the car just fine so I considered it a success.

Everybody was hot & tired but they had fun and at least now we can say we did something fun over fall break. :) We kind of laid low the rest of the weekend. I went to a craft activity at church most of the day on Saturday, and then in the evening, Donny and I went to the temple to see a family that we've known for several years be sealed together. It was a beautiful night and a sweet experience to be there with them.

Sunday was pretty rough. Instead of going to church at our regular location, we drove an hour to go to church with Donny's parents because his dad was being put in as the bishop. Suffice it to say that getting 7 people ready to leave for an entire day by 8:00 in the morning is a difficult task and I failed miserably. We were super rushed and everybody was crabby but we made it. Raya usually handles church just fine with no issues. She did fine for Sacrament meeting but once it was over, they had everyone that had come for the bishopric ordinations stay in the chapel while everyone else went to class. There were a lot of people there and the noise level got a bit higher. All of a sudden, it was just too much for my girl. She started acting funny, the way she does when she gets overloaded. Most people probably wouldn't even notice it, and it's hard to fully explain. She won't talk, she gets really stiff and rigid, she cringes a lot, and she just looks distressed. At one point, I had sat down on the bench to feed Piper a bottle, and Raya sat down next to me and tried to snuggle up with Piper's soft blanket. After a few minutes of trying to communicate without her talking, she got her point across that she wanted her blanket that had been left in the car, so Donny got it for her.
The rest of the time we were in the chapel, she curled up in the corner of the bench with her blanket over her head. She started to feel better once we left the church to go to Grandma & Grandpa's house for the afternoon. (from a sensory overload standpoint, anyway) Physically, she's still feeling yucky most of the time and we're getting a lot of this:
It was nice to have a break from our usual routine but we're all ready for school to be back in session.


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 …