My lack of posting is completely related to internet issues. RMH has pretty patchy internet service, so I can't get a signal out in the kitchen. The only time I had to blog the last few days was after I put Abby to bed, and typing while she is trying to fall asleep in the bed four feet away doesn't work so well. Since I can't get on the internet outside my room, there was no blogging to be had.
I thought I'd be able to work at the hospital while she was away from me today, but you have to have a special passcode to get on that can only be done through IT. Although a therapist called three times for someone to get me set up, no one ever came. This is especially not good when it comes to the amount of work I have to do (yep, still working...on the staff development workshop I've mentioned a few times). I was really counting on doing it during the day while Abby is at feeding school, so hopefully I can get the internet issues worked out tomorrow.
Yesterday was pretty bad. Abby was uncooperative with eating, she cowered in a corner in the playroom because she was completely overwhelmed (lots of screaming kids, some with suspected sensory issues, and even one streaker...), and I was just really concerned about the medical emergency stuff. In addition, Abby lost 3 lbs since April when she was last seen by the feeding clinic.
Needless to say, I'm pretty sure there's a big note written in Sharpie marker in the front of Abby's chart that states, "Mother is emotionally unstable." I pretty much cried the entire day.
But today was a lot better. They have put some emergency protocols in place to set me at ease, the playroom seemed to have a lot more structure today (she even came home with a cute craft), Abby reportedly interacted with the kids and played on the playground (I received lots of reports from multiple therapists--probably because of the note in the chart...), and Abby ate more than I thought she would from a stranger.
The biggest issue was that she refused to take a nap, choosing instead to apparently jump and dance on her cot. This caused a problem during her last feeding time, because she totally fell asleep during the session and barely ate anything. That left me to attempt to get 10 more ounces of milk into her this evening, which just didn't happen. Matt managed to get 6 in, which is quite respectable. Sadly, 4 had to go in the tube. :( This is frustrating, considering she's been tube-free pretty consistently for a month. I kind of felt like feeding therapy would increase her intake, not decrease it!
But I know this is a huge transition for her...not only with joining a feeding program, but also with being at RMH. Nothing is "normal" for her right now, so she's struggling with a whole lot of changes. The poor thing looks really stressed a lot of the time, and I've especially noticed the stress in the amount of expressive language she has...which is little to none right now. :( She is so timid and anxious that she really struggles to talk to anyone right now. And I don't have too many times just the two of us to just get her talking. I really didn't consider the emotional toll this would all have on her. So I'm really, really glad that we have some fun activities at RMH to bring a smile to her face. She definitely needs some stress-free fun right now.
Prayers for all of the transitions are greatly appreciated!! I am hoping that she will get used to having so many different people feed her and will start to eat more...soon...really soon...
I thought I'd be able to work at the hospital while she was away from me today, but you have to have a special passcode to get on that can only be done through IT. Although a therapist called three times for someone to get me set up, no one ever came. This is especially not good when it comes to the amount of work I have to do (yep, still working...on the staff development workshop I've mentioned a few times). I was really counting on doing it during the day while Abby is at feeding school, so hopefully I can get the internet issues worked out tomorrow.
Yesterday was pretty bad. Abby was uncooperative with eating, she cowered in a corner in the playroom because she was completely overwhelmed (lots of screaming kids, some with suspected sensory issues, and even one streaker...), and I was just really concerned about the medical emergency stuff. In addition, Abby lost 3 lbs since April when she was last seen by the feeding clinic.
Needless to say, I'm pretty sure there's a big note written in Sharpie marker in the front of Abby's chart that states, "Mother is emotionally unstable." I pretty much cried the entire day.
But today was a lot better. They have put some emergency protocols in place to set me at ease, the playroom seemed to have a lot more structure today (she even came home with a cute craft), Abby reportedly interacted with the kids and played on the playground (I received lots of reports from multiple therapists--probably because of the note in the chart...), and Abby ate more than I thought she would from a stranger.
The biggest issue was that she refused to take a nap, choosing instead to apparently jump and dance on her cot. This caused a problem during her last feeding time, because she totally fell asleep during the session and barely ate anything. That left me to attempt to get 10 more ounces of milk into her this evening, which just didn't happen. Matt managed to get 6 in, which is quite respectable. Sadly, 4 had to go in the tube. :( This is frustrating, considering she's been tube-free pretty consistently for a month. I kind of felt like feeding therapy would increase her intake, not decrease it!
But I know this is a huge transition for her...not only with joining a feeding program, but also with being at RMH. Nothing is "normal" for her right now, so she's struggling with a whole lot of changes. The poor thing looks really stressed a lot of the time, and I've especially noticed the stress in the amount of expressive language she has...which is little to none right now. :( She is so timid and anxious that she really struggles to talk to anyone right now. And I don't have too many times just the two of us to just get her talking. I really didn't consider the emotional toll this would all have on her. So I'm really, really glad that we have some fun activities at RMH to bring a smile to her face. She definitely needs some stress-free fun right now.
Prayers for all of the transitions are greatly appreciated!! I am hoping that she will get used to having so many different people feed her and will start to eat more...soon...really soon...
Comments
--Hugs!!--
And prayers....
--Raelyn