Well that was a heck of a week. It's been pretty exciting to watch the Feeding Tube Awareness facebook page grow so much so quickly. I'm not sure what the exact numbers are but we grew by close to 1,000 people over the past week. Very exciting to see that more people are hearing abou Feeding Tube Awareness and connecting with each other.
It was a pretty exhausting week for me. The ASPEN Conference was a great experience but after spending the last 4 months in my desk chair taking really intense online classes, my body is not used to that much walking and standing. To make things more fun, Raya has had a rotten week of sleep. Monday night, she was up from 10:00 to midnight crying. Reflux woke her up and then she couldn't get back to sleep. We finally fell asleep on the couch together shortly after midnight. I didn't take her to school Tuesday morning because we were both too tired to get off the couch in time to get her there by 7:45. (Side note, every time I connect her to her feeding pump as I'm dropping her off by 7:45am, I wonder how the parents who actually have to make their kids eat breakfast by mouth are able to get them there on time.) She slept better Tuesday night but Wednesday was awful.
Wednesday morning I went to Raya's parent-teacher conference that morning and had a nice discussion with her teacher about what's going well and what the concerns are. I now have to decide if I want to make the school declare her classroom a nut-free zone because of her allergies. I had assumed that it was school policy that if there is a nut allergic child in a classroom, the classroom is automatically nut-free but apparently that's not the case, so the teacher said I can decide. I don't like being put in that position. It also turns out that she IS getting speech therapy. I didn't think she was because after the initial letter came home about it, I never saw anything in her backpack about speech again but it sounds like pretty much the whole class is getting speech therapy. The issues we're seeing at home that we don't feel are age-appropriate are pretty much the same things they're seeing at school, and we're both using pretty much the same techniques to deal with it so it's nice to know that we're on the same page about that.
As soon as we got home, Raya's new support coordinator from the state came over to have our quarterly meeting. I was very, very sad when I found out that our previous SC would not be continuing with us once Raya turned 3. She was a wonderful woman who truly cared about the kids on her caseload and did the best she could to make sure that we had what we needed. I hope that the new SC will be just as good. Our meeting was long because I had to fill her in on a lot of Raya's history and what her needs are. She will now be getting habilitation as well as respite, or at least I hope the SC's supervisor will approve the hab hours. The only frustrating thing so far is that the new SC admittedly does not have much experience with kids as young as Raya so it was hard to come up with goals for hab because I'm completely new to hab and the SC doesn't work with 3 year olds to know what a 3 year old's hab goals should be. I think we got some figured out though so hopefully it will be approved.
Wednesday night started out okay. We put her in bed at the normal time, but then unbeknownst to Donny and me, she climbed out of her bed, took her backpack off of the IV pole, and went to sleep on the floor in the girls' bedroom. At 10:30, reflux hit her hard and she was awake and unhappy. She cried off & on from 10:30 until just after 2:00 when she finally was able to calm herself down enough to ask me for Smarties. Since I'd had to drain the contents of her stomach (about 220ml of formula) I figured she was probably hungry so I gave her Smarties and a drink of water and then she snuggled up next to me on the couch and went to sleep. If Thursday hadn't been Valentine's Day, I would have called off preschool again but I took her anyway. I didn't have time to connect her feed or do meds first, but she got there on time. The teacher had let me know ahead of time that they would be doing activities with food starting around 9:00, so Kaida and I went back to the school at 9:00 to pick her up. The kids were listening to a Valentine's Day story, so once the book was over, the teacher gave Raya a hug and told her to have a nice weekend and we left. She had also been kind enough (at my request) to email the other parents and ask them to not put candy in Raya's valentines. I really appreciated the other parents honoring that request because I didn't want to have to be the meanie that stole all her candy.
Thursday afternon, we went to play at a friend's house. Raya had been jumping on the trampoline with her pump backpack on and after a while, she came into the house to find me. She said, "Mommy, I'm getting wet." Her dress was a little wet but I couldn't figure out where it was coming from. Then she turned around and it was immediately clear that the pump bag had broken. Formula was dripping out of the bottom of the backpack. Luckily, her dress soaked up quite a bit of it, and luckily, my friend had extra clothes for her to wear.
Later that evening I went to visit my little buddy Jaxson at the hospital. He was admitted for a 24 hour impedence probe study so I went to keep him and his momma company for a while. He is the cutest little guy and I just want to squeeze him all the time.
Friday, Raya had the WORST session EVVVVVVERRRRRRR at OT. Ever. It had nothing to do with her therapist or with me, she's just a mess right now. I can't remember what she got upset about in the car but she was upset about something really silly. Like, she wanted me to drive when the light was red or something like that. When we got to therapy, I opened her door and unbuckled her and instead of getting out herself like she usually does, she wanted me to carry her. She had her head on my shoulder all the way into the clinic and clung to me while we were in the waiting room, neither of which is typical behavior for her. She did not insist on getting me a pen to sign her in with, nor did she climb on the chair next to the water cooler and get herself a cup of water. She continued to cling to me all the way to the therapy room we were using, which is a pretty long walk that she usually wants to do by herself. While we walked, I filled her therapist in on the lousy sleep she's had this week and she decided that Raya needed a good sensory diet day to help organize her system. I agreed.
We walked in and I laid her on the bean bag chair with a blanket over it. Her therapist started to put lotion on her legs (which usually helps) and Raya started to flip out. We decided that I just needed to disappear for a bit, so Kaida and I went over to another side of the room where she couldn't see us. She kept crying. Her therapist decided she needed to get in the cuddle swing with the heartbeat bear, which usually helps. Raya had a fit. We could hardly get her into the swing, and then she kept screaming and thrashing around the whole time she was in it.
She's supposed to be all curled up and relaxed, but that obviously did not happen. She's straight as a board and one foot is hanging out. After a few minutes, her therapist decided that she was not in a safe state of mind and needed a different kind of sensory input, so she got Raya out of the swing and headed for the ball pit.
That was a disaster before it even started. Raya got to the edge of the ball pit and her therapist picked her up and set her in it. Raya wanted to climb in by herself, so the wailing got worse. Her therapist got her out to let her climb in by herself. She still cried & screamed. I climbed in with her to try and hold her. That did NOT help. She wanted out but she was so worked up that her therapist did not feel like she was behaving safely enough to get out. She kept trying to climb out, but we told her she could get out when she calmed down. Finally after about 40 minutes of all-out, inconsolable, fight-or-flight meltdown, her therapist told her that she had to go home because she wouldn't calm down. We gathered up our things and her therapist carried my bag so that I could carry my kicking, screaming, freaked out kid.
When we got inside to where the feeding therapy room is, Raya pointed to it, meaning that she wanted to go in. I asked her if she wanted to say hi to her feeding therapist and she nodded her head yes. Her OT went to get the FT and we went inside the FT room. While we waited, Raya calmed down enough that I felt like it was okay to put her down. She walked right over to the high chair and sat down. Her therapist came in and asked her if she wanted some ice to eat. At that point, Raya had her arms folded on the table and her face on her arms. She was still sniffling but not really crying anymore. I asked her if she would like a bowl of "ice soup" and she nodded her head yes. Her therapist followed my cue and asked her if she wanted a green bowl or an orange bowl, and she chose orange. I put crushed ice and a little bit of water into the bowl and gave it to her. She happily ate her ice soup for the next 15 minutes or so. I held her to using her nice manners when she wanted more ice, and she easily obliged. It was a completely different kid than what we'd had in OT.
As distressing as these really bad meltdowns can sometimes be for me, I'm more or less used to it. I've seen it before and I'll see it again. However, this was the first time her therapists have seen her like that. This may sound bad but I was SO relieved to have someone other than myself or Donny see Raya get that out of control. She wasn't behaving badly or being naughty, she was literally in fight-or-flight mode. It is truly disturbing to see that wild look in your child's eyes and not be able to calm them down. Hopefully her body will adjust soon to the changes we've made to her diet, because diet and sleep are the nervous system's two primary regulators. Her diet change was supposed to help the reflux that was screwing up her sleep, but that hasn't happened so she's just completely a mess.
In other, more uplifting news, The big kids have been so cute lately. They really love helping with Raya, and this week Ashtyn has taken an interest in learning how to set up the pump inside the backpack. She likes to take the old bag out and throw it away. She's not quite ready to load the new one in unless I've already filled it up and primed all the air out of it, but she'll get there. It's great to have such a helpful big sister around!
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!*