Gracie was back to regular school this week. We really love her school and she seems to really enjoy the 2.5 hours a day of preschool and therapies. Some of her therapists and teachers hadn't seen her all summer so it was so rewarding to hear everyone's shock and amazement and encouragement at how much she has grown physically, socially, emotionally, and developmentally. She is doing so much more now than she was just in June and is so much more assertive (good and bad!). It was very exciting for us to hear their excitement about our precious little girl.
She's doing great sleeping on her own, still has rough nights (what kid doesn't?!) and her pediatrician yesterday said, "just let her cry! that's normal!" Ok, okay. So I'm a strict mom during the day but due to my own need to be there for her if she seizes, I'm a little more jumpy at night when she's not under anyone's direct supervision for a whole 8 hours at a stretch! She still often hates to go to sleep and fusses and cries for hours before going to sleep, but often she does very well. We're weaning off of singing and reading for an hour to just praying with her, rubbing her back, and leaving her. I'm turning the monitor down a notch so that I don't have to hear every breath of hers but just lots of movement. And I'm trusting God to wake me up and get me into her room if she is seizing.
I praise God for giving us Gracie, not just because she's so amazing and we are so in love as a whole family. But also because she has taught me so much. I have learned more through her care than in a lot of residency! What is it that patients/families need to hear? What are the loop holes that patients fall through? What are the day to day challenges with chronically ill kids that parents may not be asking me as their doctor but may actually be more important than a dosage change or a referral to a specialist? What services are my patients not receiving that could be improving their lives?
God is so good!
She's doing great sleeping on her own, still has rough nights (what kid doesn't?!) and her pediatrician yesterday said, "just let her cry! that's normal!" Ok, okay. So I'm a strict mom during the day but due to my own need to be there for her if she seizes, I'm a little more jumpy at night when she's not under anyone's direct supervision for a whole 8 hours at a stretch! She still often hates to go to sleep and fusses and cries for hours before going to sleep, but often she does very well. We're weaning off of singing and reading for an hour to just praying with her, rubbing her back, and leaving her. I'm turning the monitor down a notch so that I don't have to hear every breath of hers but just lots of movement. And I'm trusting God to wake me up and get me into her room if she is seizing.
I praise God for giving us Gracie, not just because she's so amazing and we are so in love as a whole family. But also because she has taught me so much. I have learned more through her care than in a lot of residency! What is it that patients/families need to hear? What are the loop holes that patients fall through? What are the day to day challenges with chronically ill kids that parents may not be asking me as their doctor but may actually be more important than a dosage change or a referral to a specialist? What services are my patients not receiving that could be improving their lives?
God is so good!
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