Skip to main content

Turning a corner

Sometimes when things start to go really well, I'm afraid to write about it because I don't want to jinx things. I know it's silly but it's true. At risk of jinxing things, I'm writing about it anyway. We've had such a great few days that I can't go without documenting it.

Raya went to school on Friday and then after school, she came along while I took pictures of my niece in her baptism dress. She came along as my "helper" so she could earn a little bit of money. The back story here is that Piper has 2 very soft blankets that she is very attached to. Raya happens to also really, really like Piper's blankets and steals them any chance she gets. Piper was patient with it for a while but she has gotten quite possessive lately and it has resulted in a lot of screaming. I decided to have Raya do jobs to earn money so she could buy her own blanket just like Piper's. I got an envelope and wrote "Raya's Blanket Money" on it, and numbered from 1 to 12 since the blanket cost $12. Each time she earned a dollar, she would put it in the envelope and mark off a number.
 
It took us a little longer than I meant for it to, but she earned the last couple of dollars she needed on Friday by being my photography assistant. She was so excited to mark off the last numbers on her envelope!

 When the big kids got home from school, I took Raya and Kaida shopping so we could get Raya's blanket and they could both get new shoes. I was afraid that they wouldn't have any girly prints or that they wouldn't have the right blanket but they totally delivered!
She is one very happy little girl and I'm really proud of her for earning the money! And now I have one more blankie to steal. They really are the softest blankets ever. :)

On Saturday, a local organization put on an event for kids with special needs and their families. Donny and the older kids went to a martial arts seminar so I decided to load up the two little girls and take them to the event. I was a little worried about how it would all go, but I was pleasantly surprised. Most of the activities they had were perfect for Raya. Her favorite booths were the ones with animals that she could look at and pet. I tried to get a picture of her with her hand hovering over the bearded lizard (she couldn't quite convince herself to touch it) but she moved too fast. She did touch the baby alligator but I didn't get a picture of that either. She got to pet some dogs, a cat, and a ferret too.

After we made our rounds to the booths, we decided to grab some food. To my delight, Raya actually wanted to eat something AND they actually had something she could eat! She picked a bag of Fritos and I got my food, and then we looked for a shady spot to eat. We found some shade next to a ramada where some wildlife handlers were showing birds to the kids. There was a little tiny owl, a small falcon, and a great big bald eagle. I had seen bald eagles at the zoo before but I had never been that close to one before. While I have mixed feelings about birds like that being in captivity, it was pretty awesome to see it. I decided to go for broke and see if Raya would stand next to the handler for a picture, and she did it.


The eagle showed off its impressive wingspan and its tail feathers but eventually decided to turn around and hold still for a picture. After that, we sat in the shade for a minute or two and Raya showed me how she can open little bags of Fritos all by herself. The giant inflatable slide caught her attention and she decided she wanted to give it a try. I held her Fritos for her while she climbed all the way to the top, stopped to wave at me, and then slid down. Here she is waving at me from the top:
It started to get a little toasty out in the sun, so we headed for the shade again after she went down the slide. I asked her if she wanted to go again but she didn't. They were handing out ice cream and popsicles at another ramada so I got a popsicle and we sat in the shade to eat our snacks. Raya was very sweet and shared her Fritos with Piper, who can't seem to ever get full these days.

We took a little selfie and you can see how Piper could care less about the picture because she's too busy staring at Raya's bag of chips.

We wandered around for a while and made our way back through the booths, the food line, and a couple more bounce houses before we decided we were done. On our way out, we ran into Cookie Monster and had to stop for a hug.

We sat on a bench for a while so Raya could finish her bag of Fritos while we relaxed in the cool breeze. It was lovely. She did end up finishing the Fritos, minus what she fed to Piper. It was the most she had eaten of anything without me or her feeding therapist prompting her to take more bites in a very long time. She seemed to really enjoy herself. There was a big carousel and a train ride that we could have gone on without having to pay, but we had the stroller with us and I didn't have any help with the girls or anybody to watch the stroller for me while we went, so I didn't feel comfortable doing those. I was afraid she would get upset but she handled the disappointment really well. I was actually really surprised (and grateful) at how well she handled it. We decided it was time to head home so that Piper could take a nap. I almost didn't want to leave because we were having such a great time. It wasn't that we were doing anything exciting. It was just the first time in a really long time that I felt like Raya was actually present with me, if that makes sense. Usually her brain is going a million miles a second and she can't keep her body still, like ever. Ever. She is always going and going and going, and I know this sounds bad but it gets pretty exhausting to be with her for long periods of time. This was like a breath of fresh air for me. She talked the whole time we were there, but this time it actually felt like she was talking to me with purpose, rather than talking just for the sake of talking. We were connecting, and that doesn't happen often. She is usually much too busy for that. I feel like she has slowed down a bit this week. She seems to be a little more grounded and centered than she usually is.

That has continued on past the weekend. Whatever the switch is that has flipped in her, it is affecting her positively in many ways. She is eating again. The amount of food is still pretty small, but she is trying new foods again. That hasn't happened for a long time. She has been in a baked potato/tater tot/french fry rut for as long as I can remember. At her allergist appointment a couple weeks ago, we decided to trial chicken. Getting her to eat meat is hard because the texture is a challenge for her, but we were eating some of our favorite apple chicken sausages at dinner on Sunday and when I offered some to her, she actually ate it and asked for more. We were shocked, to say the least. The last few times we've offered her new foods at dinner time, it has not been pretty. I bought more of the sausages on Monday and she ate half of one for lunch yesterday, and the other half at therapy today. I try not to take very many pictures during feeding therapy but I couldn't pass up the opportunity to take a picture of her empty plate today.

She had a wonderful OT session today, and an equally wonderful feeding therapy session. She was in a delightful mood and was just as sweet and charming as could be the whole morning. The real shocker was when she fell asleep in the car on the way home from therapy. That is almost unheard of from her. She rarely ever falls asleep during the day, and rarely ever falls asleep on her own. Sleep has been one of her biggest challenges in the past 2-3 years. I actually thought she was faking when I pulled into the garage because she does that sometimes. She thinks it's really funny. Since she didn't move when I put my face up close to hers, I decided to just take Piper out of her seat and put her in bed for a much-needed nap. Raya was still asleep when I came out to the car to get her. If it was December or January (i.e. cooler outside) I would have let her sleep longer but it was too warm for that. It was physically painful for me to unbuckle her seatbelt and take her in the house since I knew she had zero chance of staying asleep.
(yes, I realize her strap is a little twisted and probably not quite tight enough but we have to pick our battles and I consider it a win that she didn't unbuckle herself while we were driving so let's just let it go)

Yesterday while we were eating lunch, I offered to share my smoothie with Raya. She does not like to drink smoothies. The texture is off-putting to her and she doesn't usually feel adventurous enough to taste the flavors either, so I knew there was little to no chance of her tasting it, and that was fine with me. I offered to share my smoothie with her and she said she didn't really want any. I said, "Well I have some extra that won't fit in my cup, so how about if I put it in a syringe and feed it to your stomach through your G tube?" I tried to contain my glee when she agreed to that without hesitation. Most of the time, she tells me her stomach doesn't feel up to the challenge. Since she was having a good stomach day, we went for it.
This one was made with spinach, blueberries, grapes, and apple juice. (I wasn't feeling too adventurous either.) I hadn't expected her to say yes or else I would have blended it longer. I had to stop a few times to pick bits of grape or blueberry skins out of her G tube. We did manage to get it all in without me blowing the syringe out of the extension and spraying food everywhere, and without making her puke. I went pretty slow (especially with the pauses to unclog the tube) but she told me she could "feel it up here" and pointed to her neck just below her chin, which means it was refluxing up into her esophagus, but she told me she couldn't taste it so that means it didn't go all the way up to her mouth. Another win for the day.

Speaking of wins, after a rough couple of weeks, we seem to be back on track with using the toilet. Raya and I are both happy about that. She doesn't like when she doesn't get there in time. She's been sleeping better lately, and when she wakes up at night, she's been able to get back to sleep on her own without needing an additional dose of her sleep medication. Another win! She's tolerating bolus feeds pretty well, but she has also been better at vocalizing when her stomach hurts. Being able to express pain vocally is a huge step in the right direction for her so I hope that continues. I don't know what to think about all of these positive changes, but I'm trying to let go of the feeling of waiting for the other shoe to drop and just enjoy it while it's here. I don't mean to be cynical, but the reality is that the next time she catches a cold, there's a very good chance that all of these positives will go away and we'll be back to where we were a month ago. My hope is that she will have a long stretch of good health and the delightful little girl we've been enjoying all weekend will be here to stay for a while.

Comments

  1. So happy to read this, go Raya! :)

    ReplyDelete
  2. Such a great, great post. Way to rock it, Raya!

    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 …