INTELLECTUAL PROPERTY NOTICE

*ALL information on this website is the intellectual property of the blog/website owner! Unauthorized use is prohibited. If you see something you'd like to repost or share, please email me and ask first. This includes but is not limited to all text, information, and photos on the blog. Thank you!*

**Disclaimer**

**I am not a medical professional and the information on this blog is not to be construed as medical advice of any kind. ALWAYS consult with your child's doctor before making any kind of changes to his/her treatment, feeding schedule, etc.**


Friday, October 4, 2013

Small and simple things

 photo IMAG3338_zps509e401a.jpg
Things have been pretty quiet around here the last couple of weeks, which is usually a good thing. :) In mid-September, we put Raya back on a proton pump inhibitor (PPI) for her reflux, and after about a week and a half of adjusting to it, it seems to be making a difference for her. She hasn't asked me for "a Tum" in quite a while now and she's not complaining daily about puke in her throat or her throat hurting. To be honest, I hadn't expected to see such a big difference. As much as I hate that her body clearly needs a high level of acid suppression in order for her to be comfortable, I'm so glad that it's helping.

There have been some other small and simple but exciting things going on with her. First, she has decided that she likes to drink her Nexium (aka "oh-inge medicine") instead of having me put it through the tube. Admittedly, I take too many pictures of her doing mundane things, but I never thought I'd see the day when she would insist on taking any of her medications by mouth, much less do it consistently every day for 2+ weeks!

That's only one dose out of the many daily doses of prescription meds she's currently on, but it's a start!

Another thing we're excited about is that she finally got to try a meat. She is allergic to chicken (bizarre but true) so chicken is out of the question. The allergist has suggested a while back to try pork, so we started her out with some lean pork loin. Just like with any decision about Raya's food, this one had many factors involved. First, because of her food allergies to several high-protein foods (i.e. nuts), those are out of the question as protein sources. Second, because of the difficulty her stomach has moving food through to her small intestine, beans are also pretty much out of the question for the time being because they are already a slow-emptying food. (think about how long you're full after you eat a bowl of chili or a bean burrito...) Third, whatever protein sources she gets need to be lean because of the delayed gastric emptying because when fat enters the first portion of the small intestine, hormones signal the stomach to slow down the digestive process. That's bad for a child whose stomach already empties slowly. Last but not least, from a therapy standpoint, pork is a good choice because the pork loin we're using is tender, free of fat & gristle that would be difficult for her sensory-wise, easy to season, but it also takes more work to chew & eat than the foods she is able to eat so far, which is good for her. Writing it all out like this makes me laugh at the ridiculousness of the thought process involved in picking foods for her but this is our life!
Because she almost always eats better at therapy than she does at home, I like to take things to therapy that are more of a challenge for her. Last Friday I took baked potato, which is probably her current favorite food, and some pork loin that I had seasoned with salt & pepper and cooked in a frying pan that morning. (never thought I'd be cooking pork loin at 9:30 in the morning for my 3 year old...) She had tasted a small bite of pork at dinner a couple nights before and had liked it enough to eat 3 small pieces so I felt pretty optimistic going into feeding therapy. When all was said & done, she had eaten about 1/2 of a small baked potato and mayyyyyyyybe 1/2 an ounce to an ounce of pork. She seemed to really like the first 2 bites of the pork but girlfriend is not used to having to work that hard to chew up her food and she gets tired fast when it comes to chewing. Unless she really really loves something, it doesn't take long for the work to outweigh the enjoyment and, for lack of better term, she gives up and wants to quit eating whatever it is. You can't really blame her given the history of her relationship with food but it's something she's going to have to learn to overcome.

She seems so grown up lately. Some of the things she says make me laugh because she's picking up on things the big kids say and they sound funny coming out of a 3 year old's mouth. Her ability to learn the words to songs on the radio is both amazing and scary and I find myself flipping stations a lot now in order to avoid having her learn naughty lyrics to music I probably shouldn't be listening to with her in the car. Songs don't sound bad until your 3 year old starts singing them.

Then there are the comments that make me cringe a little, like the time last week when I told her it was time to get plugged into her pump and she got upset and said, "I don't WANT a tubie in my tummy anymore!" She said it out of frustration for not wanting to be tied to her backpack for the afternoon. I wish things could be different but that's just the way her body is working right now. Speeding up her feeds to decrease time on the pump just makes her feel yucky. Her favorite thing to do right now is pretend to be a kitty/doggy/jaguar/cheetah/etc. and apparently that's hard to do while you're wearing a feeding pump on your back. Every time I tell her it's time to get plugged in, she whines and throws a fit. She'll yell, "But Mommy, I'm a KITTY and KITTIES don't wear BACKPACKS!" It's hard to argue with that as I have yet to see a kitty wearing a backpack, but like I tell her, kitties still need food in their tummies. I guess I need to show her some of the pictures I've seen on the internet of cats with feeding tubes. (oh yes, they exist) When she gets upset about having to be plugged in, I always tell her that if she wants to be unplugged more, she has to eat more food. Sometimes she says she will and other times she just whines more. Thankfully now that she's feeling a bit better physically and her attention span has been ridiculously short lately, she gets over it pretty fast. Sometimes she puts her backpack in the middle of the living room and then runs around it in circles on all fours like a cat/dog/cheetah/jaguar/etc. until it tangles or kinks and starts beeping.

Anyway, back to the small but exciting things. I usually ask her in the mornings before school what she would like to have for her snack that day since she brings her own snack for safety reasons. Most of the time she asks for potato chips, which I know sounds terrible but let's not forget that she's getting at least 75% of her calories from formula still so a few potato chips aren't a bad thing. :) It's actually a pretty quick way for her to meet her oral calorie goal for the day and when I send chips with her to school, I know she'll eat her snack, which is another one of our feeding goals for her. It's hard for her to eat when there are distractions around, and I can't think of too many environments more distracting than the cafeteria at preschool.

On Monday this week I asked her what she wanted to bring for her snack and she said, "Hmmm....BAKED POTATO!" So I did what any good mother would do and cooked her a potato at 7:30 in the morning. (thank goodness for microwaves) I sent about half of it to school with her in her little Hello Kitty lunch box and she ate all but 3 bites. Considering that they eat their snack sometime during her 250ml formula feed (and probably towards the end of it) I was pretty happy with how much of the potato she ate. She had potatoes again on Wednesday but since she had feeding therapy after school today, I didn't want her to be too full so I gave her chips.

Another very exciting breakthrough she had this week was eating a peach with the skin on. She has always had a really hard time eating fruit with skins on and refused to even try eating skin on potatoes. If there was even the tiniest speck of potato skin, she would refuse to eat the whole bite. We were having to peel her grapes for her because if we didn't, she would end up with a mouth full of grape skins that she couldn't move back far enough in her mouth to swallow. With anything that had skins thicker than grape skins, she wouldn't even try to bite them and didn't want anything to do with them. Yesterday she asked for a peach because I was eating a peach. I started to slice & peel it for her and she got upset and said she wanted "a big ball peach in half with the skin on" so I gave her the half that I hadn't cut up or peeled yet. To my complete shock, she took a bite and never looked back. She ended up eating the whole half of the peach. She didn't gag on the peels or have trouble managing the juice from the incredibly juicy peach (like I was having trouble with...) and seemed to love every bite of it. I mean, LOOK at her!
I kind of want to frame this picture and hang it on the wall, even if it is just a cell phone picture. When she finished that half, she came back and asked for another one and ate about 3/4 of that one too. She left most of the peel that time but I think eating the skin off of an entire half of a peach is pretty friggin' good for one day!

I'm not sure what's gotten into her the last couple of days but she has been much more restless and wiggly than usual. Her OT appointment yesterday was almost comical. Her attention span was about half a second long, she wasn't listening to anything her therapist said, and even when she did start following directions she was very easily distracted. I can't help but wonder if the recent change in weather is somehow affecting her because it was exactly this time last year that she went a little crazy. We blamed that mostly on the stress that moving caused her but maybe the weather has something to do with it too.

Her wiggling continued at feeding therapy today. She looked really tired and wiggling is one of her defense mechanisms against falling asleep. (what is the deal with kids and fighting sleep?!) She also looked like she had black eyes because this morning before school, she went in my bathroom looking for chapstick and came out 5 minutes later with mascara on.
We didn't have time to wash it off so by the time I picked her up from school, she looked like she had a couple of big ol' shiners. We went straight from school to feeding therapy and I didn't have any wipes in the car so I couldn't wash it off then either.

By her request, for feeding therapy today she ate potato chips dipped in homemade peach jam. I went with it because dipping foods and then eating the food that she's dipping is another skill she needs to work on. (did you know that's a skill?) Usually, she will dip the food and then lick off whatever she dipped it in instead of taking a bite. Mixing textures & consistencies is still a challenge for her. With her allergies & intolerances, it's been a while since we've had anything she could use to dip food in but the chips & jam were good enough for today.
I also brought the last "ball peach" (meaning a whole peach) so she could show off her new peach skin eating skills for her therapist. She ate all of her chips (big surprise) and about 1/2 of the peach but again, she was SOOOO distracted and so squirmy that it was hard to get her to do anything. She liked dipping the chips in the jam but that didn't last too long either. She's used to eating things plain. She even eats her baked potatoes without anything on them at all, not even salt. I have not figured out her little palate yet because she loves bland foods like plain baked potato but then she also likes intense and spicy things like salsa and the peach she had today, which was very strong. Because she's been doing so well lately with eating (thanks to the Nexium, I'm pretty sure) I'm now toying with the idea of trying Periactin again to see if it would make an impact on her appetite. The kids are out of school for fall break all next week so that's probably the perfect time to try it. We shall see...

After feeding therapy today we went straight to the school to watch Cole's class erupt their volcanoes that they made this week. The weather is finally cooling down enough that we were able to be outside for an hour without being miserably hot. He was excited to have us come and Raya LOVED being there.
He gets a little upset sometimes that he only has sisters and no brothers but he is so sweet with his little sisters {most of the time} and I know he loves having them. :) Unfortunately, his volcano turned out to be a dud. Out of the whole class, there were only 3 kids that couldn't get their baking soda & vinegar concoction to bubble up out of the volcanoes and he was one of them. He brought it home today though so hopefully we can get it to work here.


I've saved the best for last. Back when Raya first started to get teeth, she was vomiting alllllll the time and I was genuinely concerned that her teeth were going to be damaged by the vomiting. On top of that, because of her extreme defensiveness about anybody coming towards her mouth with anything, I seriously wondered if she would ever be able to handle getting her teeth cleaned. Each time I've taken her to get her teeth cleaned, I have been amazed by how well she's done. I know it's a challenge for her but that seems to be one setting where the fight comes out in her and she really pushes herself to work past what scares her & stresses her out.

I think this was her 4th time (maybe 5th??) getting her teeth cleaned. We have never attempted x-rays with her before. Let's get real, I'm an adult and I can't even stand getting dental x-rays done. Those little bite wing thingies they stick between your teeth are really annoying and have made me almost gag just about every time I've done them. The idea of Raya doing them was just not something I even wanted to think about before now but this time, I felt like we should at least try. Thankfully, they only did frontal x-rays so she didn't have to have anything all the way inside her mouth. I was still really impressed and somewhat surprised by how well she did considering that the lady doing the x-rays didn't give me a chance to say that she needed to go slow when she put the thing in Raya's mouth. The lady was really lucky, actually. She went at her quickly like she probably does with every kid that she does x-rays on but Raya handled it well. I thought she looked rather adorable biting down on the little x-ray thing.
I had to laugh a little because when they asked me to bring her back for the x-ray, I said, "Okay, Raya, let's go get some x-rays." She stopped dead in her tracks, looked up at me and exclaimed, "X-RAYS?!" I said, "Don't worry, it's just x-rays of your teeth, not your belly." She instantly looked relieved and said, "Oh, okay, just my teeth," smiled, and started walking again like nothing had ever happened. All the ladies that work there said "awww" in unison. It was kind of sad but funny too. Raya actually likes getting x-rays done most of the time.

After the x-rays it was her turn to get her teeth cleaned. For Kaida's cleaning, I had been sitting on a bench near the foot of the little table thing she was laying on but with how wiggly Raya has been lately, I didn't dare not stand next to her to keep her from flinging herself off. As great as she has done at the dentist, she still gets anxiety and is unpredictable. I didn't want the hygienist to feel like I was breathing down her neck while she cleaned Raya's teeth so I said, "Just so you know, I'm not hovering, I'm just making sure she doesn't fling herself off onto the floor." She laughed and said that was totally fine. Raya surprised me again by picking the mint toothpaste instead of the bubble gum flavor. Funny kid.

As the cleaning went on, Raya's anxiety level got higher and I could see the change in her face. I moved a little closer so I could watch the look on her face just in case I needed to tell the hygienist to take a break. She squirmed a lot when the hygienist polished her teeth with the minty toothpaste. I saw a hint of the "I'm thinking about gagging" face so I had the hygienist stop and I wiped her tongue off with a paper towel, and the hygienist wiped the polish off her teeth. She still has some issues with brushing her teeth and with letting me help her brush her teeth so she had a bit of staining on the back of her lower teeth that needed to be scraped off. At one point, the dental assistant looked at me and said, "Are you just standing there to make sure she doesn't fall?" Without taking my eyes off Raya's face, I said, "No, I'm watching her facial cues so I can let you know if she's going to vomit." She said, "Oh. Yeah, definitely let us know. There's a garbage can right down there." Silly dental assistant. I wasn't hovering over any of my other children when they got their teeth cleaned so at least assume I have a good reason for doing it with this one. :)

Anyway, Raya was definitely pushed to her limits but she handled it like a champ and came out of it with pretty darn clean teeth.
After the cleaning part was done, the dentist came and looked at her teeth and then it was time for the fluoride treatment. I wasn't sure if she'd make it through that but all I had to say was that they were painting her teeth like we painted her nails and she relaxed and let him do it. I'm sure she was picturing in her mind that he was painting her teeth the same hot pink color that we put on her fingernails & toenails this week. :) Whatever works!

After that, we were done and the kids got to put their tokens in the prize machines. Along with the video games they get to play while they're waiting, the prize machine is their favorite part of going to the dentist. They all LOVE going to the dentist, which I'm extremely grateful for. Raya has been telling everybody about going to the dentist. I heard her say to someone, "I goed to the dentist and they didn't hurt me!" That made me feel bad but at least the dentist's office is one place where she doesn't have any negative or traumatic memories, unlike doctors' offices & hospitals. I'm so proud of her for everything she's accomplished this week, even if they're all small & simple things. ♥

2 comments:

  1. What great accomplishments for Raya! Especially the xray thing, and the peach skin! Even I peel my peaches. :-)

    ReplyDelete
  2. Love all the little things Raya is accomplishing! With these kiddos we learn quickly that the little things are HUGE! Way to go Raya! And thanks for sharing! I always love your posts!

    ReplyDelete

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

Related Posts Plugin for WordPress, Blogger...