Our Story

If you are here, then you are part of Emma's team. Thank you for your overwhelming love and support to Emma, her parents, her sister and brothers. We are so grateful to all of you, and particularly to the incredible staff and volunteers and Primary Childrens Hospital.

ER visits so far: 21
Anesthesia count: 15
Sedation count: 6 (Sedation isn't as bad as anesthesia - so these are saves from anesthesia)
Blood Transfusions: 6
Platelet Transfusions: 4
Port Access: 87
Hospital Admissions: 6

12/12/15

Thursday, October 3, 2013

Subtle Changes and a Tweak


Steroids make a body bulk up a bit... which is why some bodies choose to use steroids. Emma's cheeks are getting a bit puffy as she takes on a bit of the leukemia look. Her steroids also make her a super hungry little person, so whether it's the steroids or the extra calories, we can detect a slight thickening around her belly.

She still has all her hair; but she knows she will lose it. Emma doesn't like to talk about it. Her aunt is making a hat, or maybe a few. Gramma Linda has sent a couple hats already that are awfully cute. Like I say, though, Emma doesn't like to talk about hair. She lets me brush it, but she doesn't want it even braided or put in a barette any more. Just hanging loose, while she still can.

She really doesn't want to walk. She will walk where she wants to go; but if we want her to come to dinner, to go to bed, or to be anywhere, then she wants to be carried. Discomfort can be tolerated on her own errands, but not on Momma's. Which leads us to Clinton spending today working from home with a tweaked back, sitting on an ice pack and being good friends with some Tylenol. Not just carrying Emma, but also carrying Tommy and Caleb, moving furniture at my behest, and being slightly stressed.

Emma is doing pretty well today. Took a good long morning nap and had energy to play really well with Lizzy and Tommy in the afternoon. She tried a new variation today with her steroid: instead of magic shell, we tried it with Caramel sauce. The verdict: also an acceptable mask for the medicine.

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