Our normal

Here I am going post some of the things that have become our "normal." It is a little peek into our world however part of the reason for this section is for us to look at and laugh 10 years from now.

• "Jillian that is not mouth food" referring to when she tries to "eat" the feeding tube. 
• "We own teethers, you dont have to use your tube"
• "I know it might be your feeding tube, but it is not yours to play with. It might be connected to you and all but it is mine to play with"
• "I dont know why but her ear smells like Alumentum, and she has not had any is 20 hours..."
•  "I am positive you dont want to pull on that"
• Brent: "Why didnt you grab a burp rag before you fed her?" Me: "Because I thought 'how much can really come back from 15ml." Brent: "Well obviously a lot." As I sit covered in puke.
• "Are you sure you want to hold her right now, the explosion has not gone off yet" referring to either poop or puke
• "Jillian dont stick that syringe ______ (mouth, ear, eye, ect)" She has a way of grabbing them
• "Where did you park?" "3 floor parking garage going down" I got 3rd floor on the flat part! Got a better spot this time." Is it sad that we made it a game to see who can get the best parking spot at any one hospital visit to Children's. Game is lost though if you are going to the ER and have to park in the structure... 
• "It will be weird not seeing a white tube down the back of her throat when she screams"
• "It smells like a skunk is loose in this house, sadly it is just the smell of Alumentum exiting Jillian..."
• "How many tablespoons does that look like?" referring to whatever came out of Jillian
• Jillian is screaming. Me: "Do you want meds?" Jillian sees syringe and screaming stops. She loves pink medicine 
• Ahhh! The feeding pump looked like it was charging all night... but really did not! 
• The sound of Jillian "yelling" while she shoves a stuffed animal in her face
• Top things to sooth Jillian : things (passy, bear, dolly or giraffe), walk outside, singing, sound of water, or looking out a window
• The boys playing the game: "can Jillian hear this sound" so they drop things or make goofy noises
• cords everywhere! 
• "I never really noticed the tube in her nose until it was gone"
• Is that _____________(goo, puss, tissue, etc) normal?
• Letting an 8 month old choose her tubie pad every night. 
• Today Jillian wanted medicine before she went up for nap (she gets a mouth medicine right before bed, it is the only thing she gets by mouth) She was really upset that she could not have medicine. I have her .1ml of water. That is less then a drop. She was as happy as a clam!   
• When you get your child out of bed, start heading to the hall and then you realize that your foot is getting wet. You quickly discover that your foot is getting wet because your child's stomach drainage bag is not closed and is draining on your foot. Everyone wants stomach contents on your foot first thing in the morning. You clean it up, only to realize when you go to out your child in bed for a nap that you missed a puddle of stomach contents and your foot is wet once again!  
• Finishing giving a presentation on autism (I do that from time to time for KUSD) and a parent talking afterwards and making a comment (not knowing our story) and say "it could be alot worse, my kid could have some medical problem..." that is like a punch in the gut. No one means to hurt me when they say that, but it hurts