Fridays are sort of sad around here for me. They mark the closing of our weekly window of opportunity to get help. Every Sunday I am filled with hope because it is almost Monday. What that means here at Casa Dorana is that it’s “business hours” for anyone who might be able to help Chloe. This has been a crappy week regardless. Full of frustration with not being at all “the business” for the Doctors who we are hoping can help. Doctors on vacation, or not returning calls, or just not knowing what to do.
Chloe is off her meds for a few days so that she can get a test done that is sensitive to the meds. She is not a big fan of this idea, and feels worse, but is bravely pushing through. She sleeps very badly and not very much.
( or enough!) She’s managing to get through her teleclasses, though a couple of times I have found her fallen over asleep on her books. 
Just trudging on and through. Maybe next week will be better.
There are some hopeful glimpses for next week–
*Trying a new med after she finishes this test on Monday
*Hearing back from a pediatric case manager — maybe getting her some home services and/or additional advocate energy.
I know that I am failing at proper thank you notes to the many people who have helped out with meals and other things. Please know that you are SO APPRECIATED! It helps so much, and is such a blessing. A million times THANK YOU.
Anyone with some GOOD WORDS? I’d be glad to hear them! Actually I am sitting in Chloe’s recliner ( the one she can’t manage to spend more than a few minutes in without feeling worse) and she is apparently doing her “internet anthropology work” Here is the statement that she just fired out of the bed-cave
“Mom, spell Apocalypse for me….OK, Do you know there is no “brainpop” video for POT syndrome OR the Apocalypse??? Oh, They will be HEARING from me!”
This is particularly funny because Jimmy’s late Grandfather was a big proponent of WRITING TO IMPORTANT PEOPLE in order to GET THINGS DONE. Jim inherited quite a few carbon copies of typewritten letters to various officials. This makes me think of him and those. How much easier it is to be heard nowadays with the internets. Never fear! Chloe’s on the case!
Perhaps I need to get her inspired to figure out a STINKBUG ERADICATION PLOY. Sick. of. them.
Hope you all have a nice false-spring weekend.
xo Dawn
These made me stop in the aisle and laugh out loud at Target
Tags: POTS, valentine's day
Maybe you can teach those weird little gnome things to eat the stink bugs. Ya?
I’ll write a letter to them and see.
write. it. down.
Those Barbies make me laugh! Tell Coco cinnamon muffins take 2 is on the schedule for tomorrow.
You were the person I thought of FIRST when I spied them
Cocoa says YAY!!!
you are such an amazing mother, dawn. seriously, just reading about what you and your sweet daughter are going through is enough to make me count my blessings. my heart goes out to you and her…and i pray that she finds relief (in whatever form) so very soon. now that i have a daughter of my own (yes, it’s a GIRL!) i can’t imagine how heavily this daily struggle must weigh on your good heart. and yet you still manage to keep your chin up and create such awesomely colorful projects with your girls! i am really enjoying your pictures!
take care and you’ll be in my thoughts.