Hi Mommas-
I'm a lurker, and now finally a poster, at the end of my rope.
We are foster parents to a 16 month old who is ex-26 weeker with significant chronic lung disease, dysphagia, reflux, and a bevy of upper airway issues. She is also on the spectrum of fetal alcohol syndrome.
She is oxygen and g-tube dependant.
Our issue is nights. She is only moderately developmentally delayed thanks to the wonders of early intervention. She is very active and deals with sensory issues though we are doing Welbarger protocol which seems to help.
She WON'T sleep!! With the hyperactivity we are in a constant tangle of wires (02, pulse ox, feed pump). We have a strict sleep schedule and routine, because she will get so overtired and just have a unconsolable meltdown.
But, it is like she just can't shut down. We've tried swaddling, but she gets hot and irritated though it does help. I've considered a pressure blanket.
She will play happily in her crib for up to 3 hours a night. (Though she is setting off all alarms, taking off the pulse ox, opening the med port of her feed tube...) If she is upset (rarely) we will go in there and try to comfort and encourage her to lay down.
One Dr. thinks the sleeplessness is FAS, others just think it's normal. I've been fp'ing for awhile and this degree of alertness at night is new to me.
So my questions:
How do you deal with the tangle of wires at night?
Any suggestions for better rest? Thanks!
I'm a lurker, and now finally a poster, at the end of my rope.
We are foster parents to a 16 month old who is ex-26 weeker with significant chronic lung disease, dysphagia, reflux, and a bevy of upper airway issues. She is also on the spectrum of fetal alcohol syndrome.
She is oxygen and g-tube dependant.
Our issue is nights. She is only moderately developmentally delayed thanks to the wonders of early intervention. She is very active and deals with sensory issues though we are doing Welbarger protocol which seems to help.
She WON'T sleep!! With the hyperactivity we are in a constant tangle of wires (02, pulse ox, feed pump). We have a strict sleep schedule and routine, because she will get so overtired and just have a unconsolable meltdown.
But, it is like she just can't shut down. We've tried swaddling, but she gets hot and irritated though it does help. I've considered a pressure blanket.
She will play happily in her crib for up to 3 hours a night. (Though she is setting off all alarms, taking off the pulse ox, opening the med port of her feed tube...) If she is upset (rarely) we will go in there and try to comfort and encourage her to lay down.
One Dr. thinks the sleeplessness is FAS, others just think it's normal. I've been fp'ing for awhile and this degree of alertness at night is new to me.
So my questions:
How do you deal with the tangle of wires at night?
Any suggestions for better rest? Thanks!
