Day 8: I'm Tired

We are worn out!  It's really catching up with me how tired I am.  This coming week might be harder than last, but I'm looking forward to the results of our hard work and praying to make it through the rough day's ahead.  "Courage take for goodness sake!" I'm also excited for the weekend to finally get a break, see my baby boy, and hopefully have some fun.  "Just keep swimming, swimming, swimming!" 

Whitney threw up about 4 oz last night at 12:45am. She woke up crying so I jumped up and grabbed a cup to catch it in. Whitney does have some side effects from the periactin medicine.  It happens the first day or two that we start it up after her two days off. We have to cycle this med so her body doesn't become immune to it. She vomits the next day when she is off it and also the day she is given the first dose back on the cycle. She also experiences mood swings, crankiness, and feels more tired. We work through it at home pretty well, but here when she is working super hard trying to eat, well it was a bit more difficult. 

She seemed to sleep well besides the throw up episode last night. She just wasn't in the mood for eating today though. We did okay at breakfast and I helped with the motivation and rewards. She drank a couple ounces of Apple juice, tried some sausage, pancake, and strawberry. 

Snack time in our room was good. Whitney ate one Apple slice, 1 tbsp yogurt, and a couple ounces of chocolate boost kids essential. She really likes it when we play pretend like the spoon falls into the "mud" yogurt and needs help to be licked clean! 

Here's me, sporting my morning look and CDH ribbon shirt. 

Photos of the day: Super Tubies! 

I think I was trying to block this out because I totally for got to mention lunch time...and now I'm editing it and putting it in. Well she started off great eating some garlic bread and drinking about 3 ounces of vanilla boost drink. But she got tired soon and was slowing way down. She willingly took another bite of bread and then said she needed to barf. We couldn't distract her so we got the garbage can out for her. It's so sad seeing all her hard work and calories come out and I feel so bad for her.  But she drank an ounce more of drink and then we were done. 

These next two pictures explain it all, haha. Not excited today.

She loves to talk in the microphone when she's done with mealtimes! We can't understand what she says most of the time but it's funny to watch. 

We got a few letters and packages today!! Definitely made us smile on this rough day here at camp CHOC! Whitney got a letter from her preschool friend, I got one from my friends, and lots of gifts from both grandparents!  So fun! 

We made it down to talk with Crush! He called on " Wipe out Whitney" again and she was asking where Nemo and Dory were at. Crush didn't understand most of what she was saying either but at least she is trying and was having fun. 

Then we head over to the "library" for some books and quiet coloring time.  Afterwards we went outside until it snack time. 

Snack time went pretty well and I got to lead the session while the therapist took the back seat and helped when needed. Whitney laid her head down a lot and she plays with her hands a lot and gets distracted by other things. So I just keep on trying to think of new creative ways to bring her back and focus. It's not too hard to entertain a four year old but when it comes to food, yeah it's hard. Whitney drank 2 ounces of strawberry boost kids essential, 2 baby carrots, a little of a pb&j sandwich, and almost a quarter of the string cheese. 

Shortly after we got back to our room, after talking with the therapist, and psychologists, and dietitian, Whitney fell asleep while playing her leap pad at 5 pm. And then so did I haha, which pretty much ruined the rest of the day! We got up at 7pm and she was cranky and didn't want anything to do with food. Eventually we just cuddled and tried to go back to sleep. But she stayed up till about 9:45pm. The nurse started her night drip and Whitney watched the numbers on the pump for a while and talked to the nurse, who also didn't understand a lot of what she was saying to her. 

(her hair is Not cut, it's just inside her shirt!) 

Weight: 15.1kg still pretty much maintaining it, may be fluids weight and not tissue loss.