She Will Amaze You

Kids with PWS can have temperature regulation issues. While she was in the NICU, Ellie did really well. Today, though, on the first real Fall day, I guess I didn't dress her enough. Poor nugget, her hands and feet turned purple, in her socks, and under a blanket. I added extra layers, but she kept getting colder, so I stripped her down, and she's tucked under my shirt, skin to skin.

:(

Yesterday, I met with Mandy and her daughter, Sophie, who also has PWS, and is a month older than Ellie. Thank God for her! She's local, she's real, I already know we're going to be close. I am beyond grateful to have someone to go on the journey with. I know I have lots of support online, but it's nice to have someone who sees all the same people as us. It's good.

Tomorrow, we have the PWS clinic day, and Jason is going to come with me to the presentations. I'm looking forward to hearing what is going on, and looking forward to seeing what our next steps are.

I saw one of Ellie's nurses from St. Paul's today, I made her some blankets for her new baby, and she marveled at how Ellie has changed. I think I'm going to go downtown next week for a visit!