Winning One Battle but Fighting Another

It seems we have won the battle over Faith getting up and getting ready for school in the mornings. She is no longer protesting and wakes up in the morning excited to bring a "special guest" to school. Last week she pretended to get Clifford the Big Red dog ready for school, but he couldn't fit in our van, so he had to ride on top. She also talks about how when she gets to school, she is going to help take care of one of her friends who is also in a wheelchair.

A few things are helping Faith with her morning routine. One she is getting more rest and not feeling so fatigued throughout the week as she is only going half-days on Tuesdays and Thursdays. Another is that we have been feeding her Pediasure with 1.5 times more calories than what she has gotten before. This is helping with both her energy and her weight. Rob took her in to get weighed last week and she has gained almost a pound since getting the added calories.

While the mornings have been going great, we have a new battle to face at night. Getting her to bed has become our latest battle - one we thought we had already won. Sometimes as a ploy to get her own way, she tells us she wants more food in her tummy so she can stay up and watch her iPad.

I have a friend from college who has posted accounts on Facebook that she has actually had to pin her child down to keep her in bed at night. I'm sure if Faith could, she would be getting out of bed. The most she can do though is try to scoot herself off the bed. And that, along with making a lot of noise is the battle that ensues at night.

This past Friday night the only way we could get her to agree to go to sleep without having a nighttime screaming fit is for me to lay down in her bed with her. At midnight, she was still wide awake. I finally gave up and Rob took her out of bed and sat up with her on the couch. She screamed for about ten minutes before finally drifting off to sleep. Thankfully, none of us had to get up and go anywhere the next morning.

Faith ends her evening with her last feeding of the day while watching her iPad

Last night she was still protesting going to bed, but it wasn't nearly as bad as the night before had been. We'll see what tonight brings. She doesn't have school tomorrow, but her mom has to work and for that, I need my sleep!

Faith can be very strong willed - which has its good and bad points, but we are both thankful that she is a fighter nonetheless. We just have to help her find the right things to fight for! And fighting going to bed just isn't one of them.

Comments

  1. Hi Cari!
    My name is Krysta Olson. I just friend requested you on Facebook. I'll contact you this way since I couldn't find any other way on your blog. I came across your blog a few days ago. I'm sure not by accident either. God had his hand in this because I've been searching for awhile trying to find someone else out there who has a child with PVL. I have a son with PVL and cerebral palsy. He is 21 months old now. I really enjoyed scrolling through your blog and reading about your beautiful little girl! I hope you're open to questions!

    ReplyDelete

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