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A bit of disappointment but we're not giving up

This is quite possibly my longest blog post ever but there's a lot to talk about. I feel like I say this in every blog post (or at least all the Tuesdays) but today was such a long and tiring day! At least it didn't start out with Raya sprinkling Apple Cinnamon Chex from one end of the house to the other though. (that was yesterday) Oh wait, it did start with a super soggy and poopy diaper that leaked all over her bed though.

We dropped the big kids off at school and then I decided it was time to pull all of the dead cornstalks out of the garden so I could weed whack the stupid bermuda grass that grew when I started watering the garden. Raya kept peeking her head out the door and I'd say, "Raya, you need to go in the house." She would smile and say, "I AM!" And technically she was right, her head was the only thing that was outside. The girls REALLY wanted to come out and "help" me so I cleared all the overgrown stuff out of the way and let them hunt for hidden treasure, aka onions. 

It was all fun and games until Raya found a plastic BB and put it in her mouth. That was when I told the girls they HAD to go in the house while I used the weed whacker. I stink at it but at least it looks better out there. It was only about 90 degrees but it was really muggy so we were all in desperate need of showers when we came in, which we took after I snaked out the clogged bathtub drain. It was only fair since it was my ridiculously long hair that clogged it to begin with. Once Raya was all clean and fresh, I laid her on my bed so I could vent her puffy tummy. She is now very amused by the noise of her tummy burps. She thought it was SO funny and kept saying, "More burp! More burp!" Then we did her hair and she HAD to have mousse in it. She's funny like that. Her hair is curly in the back but straight on the top & in the front so it just ends up looking crazy if I leave it down. We did pigtails and she picked out her favorite zebra pants & shirt to wear to therapy. Thankfully today was not one of the days where I have to wrestle her into her clothes. Those are never fun. It did take her 10 minutes to put her flip-flops on. We still haven't found the match to either of them so she wore mismatched shoes to therapy again.

She had a great OT session today. The SPIO kit that we've been using went back to the other clinic on the opposite side of town so we'll be seeing how she does without it for a while. I could tell a difference in some of her activities today. The biggest difference was her trunk stability (or lack, thereof) while she was jumping on the air mattress. Her core is weak so after about 30 seconds to a minute of jumping, she starts to bounce all over instead of being in control of where she jumps. It also becomes apparent after a few minutes that the strength in her legs is not equal. The crazy thing is that she IS able to jump for a long time. She's a big, solid, tough girl so it's easy to miss her deficits if you don't know to look for them, which isn't a bad thing I suppose. 

One of the biggest hindrances to Raya's progress lately is her lack of ability to sustain her focus on a task for very long. She is very easily distracted and sometimes I think she's so used to getting distracted by every little thing that she finds ways to distract herself. Since helping her learn to focus is one of our main objectives now, when she's doing something during OT and she's staying interested, her therapist lets her keep going until she says she wants to stop. Today it was jumping. She was like the energizer bunny! I don't think I could have even done what she did today. Every time her therapist would ask her if she was all done or if she wanted more jumping, she would whisper, "more." Not sure why she feels the need to whisper since she yells everything at home but whatever. For almost 20 minutes, she was a bouncing ball of hot pink & zebra print.
Every time she'd flop down to rest, her therapist would ask her if she was done or if she wanted more and she'd get up and start jumping again. Girlfriend is developing a great work ethic already. Therapy now, olympics in 20 years. :) 

Finally her little legs just couldn't bounce her anymore so she sat down to rest.
And please ignore the zig-zagged part in her hair. Parting hair straight on a moving target is hard.

While Raya was doing her therapy, Kaida was having the time of her life in the ball pit. She has a hard time at therapy sometimes because all the little kids there look like they're having so much fun and she doesn't usually get to do what they're doing. She got her feelings hurt a little bit because one of the therapists turned on the bounce mattress and Kaida thought she had invited her to jump on it but it turned out she wasn't talking to Kaida. She was embarrassed and sad so then she sat on my lap and cried for a minute and then played Angry Birds on my phone until we were done.  Both of the girls wore themselves out and fell asleep in the car by the time we got home. I hated to have to get them out of the car.

I almost got Raya onto the couch without her waking up but she wanted a drink of water. After that she was wide awake again. She was begging for food since we were eating lunch and we had another whole hour before her feeding therapist came so I gave her a formula feed. I try not to feed her before therapy because then it's harder to get her to want to eat but it was 12:30 and all she'd had all day was 2/3 of a Nutri-Grain bar and a little water. She had a little snuggle on the couch with Tubie-rina while her backpack fed her tummy.

On to the disappointing part. Feeding therapy went pretty much as I had anticipated. (not great) I usually sit at the table with them but I was making cookies so I didn't this time. They started with cold, straight-from-the-fridge refried beans since that's what Raya's been eating lately. Her therapist brought mini M&Ms as a motivator this time since she's not responding to ice & water anymore. (had to pull out the big guns...) She did fine eating the beans but it went downhill once they moved on to chunks of apple. Raya had no desire to swallow the chewed up apple so she held it in her mouth. She's been doing that ever since Friday when she threw up from eating the crunchy peanut butter. 

When she has something in her mouth that she doesn't want to swallow, her therapist will remind her that she doesn't get her M&Ms until her mouth is clean. It was working beautifully up until about 3 weeks ago. Now it only works if she cares enough about the motivator to swallow something that she doesn't want to swallow, which is happening less and less. After she reminds Raya to clean her mouth, Raya sometimes tries to get attention by acting silly. She doesn't really do it to me but she does it to her therapist a lot. Today was the worst I've seen her act. She was waving her arms around, slapping the table with her hands, kicking her chair, pushing herself back from the table, staring out the window, and whatever else she could think of to try and get her attention. Her therapist kept a straight face the whole time and looked away so Raya knew that it wasn't working. I didn't make eye contact with her either but I had to turn my back a couple times to keep her from seeing me almost laugh. It really wasn't funny though. I've never seen her act like that before and it was one of those moments that tugs at my heart strings for her because behavior like what she was doing is not socially acceptable. It's moments like that when I think, "Crap! How is this kid going to function in life if she keeps doing this?!" and THAT'S why we're still doing therapies.
After what her therapist decided was a reasonable amount of time, she asked Raya one more time if she was going to clean her mouth so she could have her M&Ms, and when Raya didn't, she told her she was done and got her down from the table. We talked for a while after that because there was a lot to talk about. *sigh*

At our session 2 or 3 weeks ago, Raya got her little heart broken because her therapist told her she'd take away the ice Raya wanted if she didn't swallow, and she stuck to it. Raya cried for 15 minutes after that. Her therapist really expected that to be a turning point for her but the last couple of sessions have been downhill. We agreed that one factor is the fact that Raya's been working really hard at OT and so she wears herself out, doesn't have a nap, and then has feeding therapy when she can barely keep her eyes open. (part of the reason for the squirminess) We also discussed the possible reasons for the lack of progress (and I would even venture to say regression). We're not in complete agreement about that but it's okay. I feel like Raya was already going backwards a bit and then when she threw up after eating the crunchy peanut butter, it was like the straw that broke the camel's back and she will only swallow what she really wants to swallow now. Her therapist agreed that Raya definitely made an association between eating and vomiting again but didn't really think that was much of a factor in her not swallowing much anymore. I don't remember her exact words now but I think she felt like it was more that she had just lost her motivation. 

She also felt like the lack of hunger from getting a tube feed an hour before therapy played a part in it. I still have a hard time fully accepting that explanation because having been around Raya all the time, I have never seen much of a correlation between times when she should be hungry and her eating. Her therapist told me that although Raya still doesn't seem to make the connection between feeling hungry and satiation, it doesn't mean that her body can't feel satiated when she's eating. She may not consciously understand that when she feels hungry, eating makes her feel better but that lack of understanding doesn't take away the feelings. It makes sense and I understand what she's saying, it's just hard for me to accept that when I've seen Raya go until 5pm without getting a formula feed (unintentionally, of course) and not seem to react at all. I do see what she's talking about though. I also wonder if keeping her on a once-a-day dose of Prilosec was a mistake because there was definitely a correlation between her running out of it and being completely off of it for a few days, then going back on half of what she'd been on before and the decline in her eating. At the same time though, I just hate having to keep her on it and if she can stay on half the original dose then I'd rather do that.

After feeding therapy, the girls helped me put the cookie dough on baking sheets. Kaida did a pretty good job lining them up evenly. Raya, however...
I love how she put one ball of cookie dough in each corner and then piled the rest in the middle. :)

The rest of the evening went well and she even ate some dinner. I cooked black beans in the crock pot and made fresh salsa and she ate a little of both, a few nibbles of tortilla chip, and a little piece of a tortilla. I considered it a success. After dinner she laid on my bed looking at a book while I put clean sheets in her bed. When I looked over at her, she just looked so grown up! I think it was the watch on her arm that did it. :)


So where do we go from here. I think her therapist was really disappointed today that things didn't turn around. So was I. We talked about the appointment time (1:30 on Tuesday after a 11:00 OT appt) being part of the problem but right now there's nothing else available so we're stuck with what we've got. Her suggestion was that we have our session next week and see how it goes. If it's about the same as the last few sessions, then we're going to take a break from feeding therapy for a while. She said that since Raya's no longer responding to motivators, she's not quite sure where to go from here and that a break might be the best thing for Raya. That was a little bit hard to hear. I know that she's not in any way saying that she's giving up on Raya, but we've never been told that before from any of her therapies and it feels like a huge setback. Disappointing and discouraging for sure. I agree that she probably needs a break though and maybe I do too. The girl has been getting feeding therapy since she was 5 months old. When you're only 2 years and 9 months, that's a REALLY long time.

Taking a break from therapy doesn't mean we're giving up or that Raya getting rid of the tube is hopeless. We all just need a chance to regroup. We will continue to work with the skills we've been taught and hopefully Raya will keep making progress with OT that will carry over into eating. Today is one of those days when I have to watch this video again to remind myself of where we started and how far we've come so that I can keep believing that we can go farther.


Untitled from Brandis G on Vimeo.

Comments

  1. Great video--I don't think I had seen this one. Hang in there--the latest setbacks will fade and she'll once again move forward.

    ReplyDelete

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