Rejoice always, pray without ceasing, in everything give thanks; for this is the will of God in Jesus Christ for you. - 1 Thessalonians 5:16-18
Monday, January 26, 2015
Posted by Lucy's Mama at 10:13 AM
Monday, January 5, 2015
Posted by Lucy's Mama at 10:11 AM
Tuesday, December 30, 2014
Sorry for the long interlude, faithful readers! Looks like my last post was at the end of August, so that was right before Lucy got sick. Wah wah... Yep. Lucy got sick right at the beginning of September, and it was a doozy. She couldn't kick it for a full month, and then she had what I think was some allergy problems right on the end of it that extended it into mid-October, and then she had a vomit, and an additional choking episode. A pretty scary episode, that dropped her oxygen level into the 60s (100 is what you're shooting for) and kept her heart rate low for awhile afterward, which is unusual for Lucy.
All that means that we are doubly, triply, quadruply and beyond blessed that she's in her new room now. Lucy hasn't wanted to spend much time off of her bipap, and has been reluctant to leave her room. She's dealing with a lot of anxiety, due to this episode she had, and understandably so. She prefers the comfort of her safe zone, and we are more than happy to allow her that comfort. We're working her back up to what we hope will be her old baseline as far as time off of her bipap, and working on getting her out and around the first floor, but it's slow going. Lucy is older, and weaker, and we are still figuring out when to push and when to back off and recognize that she needs extra help. The anxiety also seems to be affecting her sleep; she appears to be afraid to go to sleep, thinking that we will leave her alone, and has been crying when she starts to feel herself falling asleep. There has been constant wakefulness through the night, every night, with lots of crying - she's even panicked when I've had to go to the bathroom... 10 feet away. I had to yell to her over and over that I could hear her and was coming back. We are working on reassuring her and easing her anxiety... but it's hard. We can't guarantee her nothing will happen. It has, and it can. She seems to be calming down a bit these past few days, so we're hoping she's relaxing again.
This would be a completely different feeling, a completely different situation, if we were still in her old room. We were tight on space, both in her room and her bath, and that would have only added to the stress of the situation. As it is, Lucy can now do school time (she had her teachers and therapists still visiting her at home until the end of November) and play time comfortably in her room, if she chooses not to leave. The amount we have to carry her is drastically reduced, since we aren't navigating a flight of stairs, and so it's safer and more comfortable for her to head to the kitchen, living room, or dining room to work on projects or help me bake :) We can roll her right to where she needs to go on her hi-low base, and the only transfer that needs to happen is from her bed to the base. Bathing is a snap now too, with the higher, larger tub - two people can easily access her, and she can stretch her legs and arms comfortably. It's truly a dream come true, for all of us!
I had taken copious amounts of pictures throughout the entire process, and was going to put together a type of flip-book slideshow, but... well, the best laid plans and all... anyway, that plan is scrapped. You'll get to see them in the entirely un-fancy blog post style.
And here they are!
Posted by Lucy's Mama at 5:50 PM