Aimee spent Wednesday in clinic for wheelchair adjustments and her first magec rod expansion. I wouldn’t have ventured out with her yet as she is still recovering from a cold, but her nurse was with us to help her stay safe. It was a bit chaotic with all the kids and all the suctioning and all the meds we had to pick up, but we did it! Because her appt had been messed up the week before, we weren’t able to have the surgeon do her intial expansion. The nurse practitioner was the same one who had brushed us off with Aimee’s wound stuff. We don’t have much confidence in her and, honestly, this is experience didn’t inspire more. We were told by the surgeon last week that the left side would be expanded 2mm. She ended up expanding it 8.1mm after 15 minutes of head scratching, contradiction, and discussion with the ultrasound tech. It was not inspiring. In the end though, Aimee is okay, if irritable, following the expansion.
Monday we had our first night with an overnight nurse. It was exhausting as I needed to stay up to train her. Hopefully after a couple more shifts with her, it will mean more sleep instead of less. I never would have believed that I would agree to a night nurse in our home that was a stranger. It is not easy to accept, but we are ready for the help.
Aimee has been enjoying listening to audiobooks lately. Yesterday she listened to part of the Jesus Storybook Bible and all of Mr Popper’s Penguins. It is pretty sweet to see her brothers (usually Caleb) sneak into her bed to listen along with her. If anyone is looking for a gift to give Aimee for her 9th birthday next week, she would definitely enjoy amazon audible gifts to build her collection of audiobooks.
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We love to read your comments and encouragements! Messages to Aimee are always welcome too. I will definitely read them to her. :)
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