Ramblings tonight while at starbucks.

So I am sitting here at starbucks supposed to be studying and figured I might just get on my blog today.
I would like for people to have more understanding of my daughters disease but I am not sure they are open to getting it. I can't just pick up and go anymore like I used to with her. I have to think will she be touching anything, do i need to get her mask, is this something I can wait to do. Its not fun trust me. I would love to go hang out with whoever but that is just not in the cards anymore. I have to ask has your kid had the sneezes in the past two days, snots, fevers, rashes, diahrreha, and the list goes on. HEll i have to do a medical assessment on them pretty much.Good thing I am going to nursing school.
My nerves are at an all time high tonight. Tomorrow we have a phone covo with the dr to see what we do about the medication that kenadie is going to be recieving through iv. I am nervous. Its a change. As soon as I get a rythym of goingn to this doc or that dr all hell breaks loose and we get another change. I am scared that she wont do good on the drug and have crappy side effects like she does with most drugs we try her on now. I dont want to see her get poked all the time either. It really sucks she can't have the port. Plus tomorrow forces me out of denial land. I like to keep my vip membership and i have a feeling an eviction notice is coming. My brain loves to see kenadie beautiful smart and healthy on the exterior bc she does not have that outside markers that she is sick such as a facial deformity or whatever. So if she has her good days your brain drift off to denial land. But when I realize a big dr appt comes my aneixty and panick attacks suck. Especially when i deal with peoples remarks too.
Just the other day someone wanted to know kenadie's beginning story and they asked me from the beginning so i told them how the pregnancy and stuff went. So the comment I got was do you think your body was trying to get rid of her and you tried to hard to keep her?! WTF?! I really thought I heard it all but I guess not. It was a person on the floor where i was taking care of pts. I swear they get so desensitized some times. They need to remember I am a mother and I have feelings like anyone else does. She is my child not specimen or something.

Btw keep your eyes peeled for a resale shop i am going to be opening. It will have childrens clothes, toys, and good stuff in it. all like new or with tags on. All proceeds will be going to flights to cleveland and amino acid treatments.
we also are going to hold a birthday/charity party for kenadie! October 30! Keep your eyes peeled for where and time! You can always be there in spirit.