We really pushed Raya today with PT. We made her walk to the park (5 houses down) WITH shoes on, which she rarely ever wears. Let's just say the girl is not a fan of uneven surfaces of any kind, starting with the slope of the driveways we walked across. It really threw off her balance walking on that sideways slant. When we got to the park, her PT made her walk down a hill of grass (which needed to be mowed) and once again, she got stressed and bent over to touch the ground, which turned out to be wet tickly grass. That stressed her out even more. She made it to the bottom and then had to be carried to the sidewalk. Then her PT took her to the middle of the sand and got her to walk out. I always assumed it was the feel of the sand on her bare feet that kept her out of it but even with shoes on she really didn't like walking in it. We worked her at the park for about 20 minutes and then started walking home. She only made it halfway across one slanted driveway and she was DONE. Bless her little heart, she just started bawling and that was IT. I carried her the rest of the way home but after that she wasn't interested in doing any more PT. :)
Right after that, I attempted to put her in bed for a nap since her feeding therapist was coming at 1:00. I decided to do the pump feed in the morning while she was napping and the bolus feeds in the afternoon while she was awake, so I picked up the backpack and was surprised to feel how heavy it was. I looked inside and the stupid pump bag was completely full. We're not sure what happened because Donny filled it up and checked all the settings and started the overnight feed before he went to bed last night. It never beeped during the night and this morning when I looked at it, the pump said 485ml had been fed which is normal. I don't know how it was possible for it to run all night and say that the right amount was delivered but have the bag still be completely full. Irritating to say the least, and that was just the start of the downhill part of the day.
I hooked up her feed and put her in bed and started on laundry. Then I peeked in to check on her a little while later and found this:
It's become pretty much routine for her to open up the backpack and dismantle everything inside, but when I got closer, I realized she had also opened the medicine port on her J tube extension tube. There were little puddles of formula and fluorescent yellow bile everywhere and she was having a lovely time playing with the frozen solid ice pack and washcloth it was wrapped in.
The girl evidently has zero sensitivity to cold because she is obsessed with ice packs and cold things. I told myself that a premeditated bile/formula leak was still better than having to clean up a poop mess but it's still gross. Since she had it all over her legs I had to give her a shower. Then I stripped everything but the waterproof mattress pad out of her bed (which, by the way, I had JUST put clean bedding on).
I gave her a 30 minute snooze before feeding therapy so she was nice and grumpy when her FT came. She was super grabby and didn't want anybody touching her. It was fun. yeah. fun. On a positive note though, for whatever reason, her aversion to food touching her lips seems to be lessening. In other words, instead of gagging and/or pressing her lips & turning her head, she has started to let food touch her lips and even go in far enough that she can bite down on it. She's doing really well with wiping the food out of her mouth when she's ready for it to go away too instead of gagging and throwing up to get it out. One small step but it feels like a HUGE leap in the right direction.
Today she tried a popsicle:
|She looks excited about it, doesn't she? :)|
|This is Raya yanking the popsicle away from her FT's hand, i.e. expressing her opinion about the FT trying to help her. :)|
The rest of the evening, she was whiny, clingy, fussy and really refluxy. That's probably my fault because I didn't make it to the pharmacy to pick up her refills of prilosec & amitryptiline until tonight and the prilosec expired a couple days ago so that may be partly to blame for her crazy reflux this week. We kind of snuggled on the couch tonight. I say kind of because she would lay there for a few seconds at a time and then move to a new position while whining/crying. For 2 hours. We had finally settled into a good snuggle when Daddy got home. As soon as she heard the key in the lock, she popped up off the couch and said, "DADDA!!" and that was the end of the snuggle. Hopefully tomorrow will be a LOT less messy and she'll get the right amount of calories & hydration.