Kiera has been having up and down days lately. It's been rough. She has started a tributaline nebulizer instead of her albuturol (sp?), and it seems to be helping. She seems better today than she was this weekend (which was not good). She's smiling and playing. She likes to dance (or get wiggled and bounced all over by mommy and daddy while music is playing).
She tasted a grape popsicle today. It was so cute. She grabbed it with her hands and took no notice of the cold. Then she enjoyed licking her fingers. She didn't know what to think of the popsicle on her lips until mommy took a lick and showed her. Then Kiera opened her mouth wide and stuck her tongue out. She is so smart and observes everything.
We are waiting on Dr. Kanamori to report back from a conference this week at Cincinnati Children's Hospital with a bunch of ENT experts regarding Kiera's Tracheal Malacia (floppy airway), and bronchis suis. It's starting to feel (after 13 months) that she's never coming home. We have another care conference for her with all the doctors next Monday. Her G-J tube has prolapsed and looks nasty, but there isn't much we can do about it. It's the least of her problems anyway. Can you tell I'm drained?
Love,Therese
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