We made it to the Rochester Fair last Saturday. We got there early and visited all the animals. I think the cows were Myas favorite. We saw a baby calf that had just been born the night before! He was resting after his big entrance. We walked around the midway and made it through the exotic animal area. They had a kangaroo, a zebra, and even a giraffe. After we had some yummy fair food, it was time to go. Both the girls were pooped. But, we were there for 3 hours, which is impressive for Mya. Myas condition has been going downhill since her school visit last Wednesday. She has eaten almost nothing by mouth, so we have had to rely of the liquid formula. We do this overnight, but complicating it is the fact that Mya has started vomiting again each and every night. So, what goes in comes out. We can see her weight has been affected a little bit, but we have put her back on Zofran to combat nausea. In the hope that this will help it. The past two days have been the most alarming. Mya is so tired, all she wants to do is sleep. Today, she pretty much slept from when I left at 6am until 1pm. Then she suddenly announced that she wanted to go over to Wendys house (her babysitter that lives 3 doors down). Ray said ok and went to get her stuff ready. Well, Mya didnt want to wait! Next thing Ray knew, she was out the door and walking over to Wendys house! He went out to follow her, but Wendy had seen her coming and met her halfway. Yup, thats our girl!! She stayed for a bit but was ready to coming home after a short while. She was tucked into bed by 4:45pm. Tomorrow, we are scheduled for our 3 month MRI. The pictures should show us how or if the radiation sessions were effective. Honestly, Im more interested in seeing the pictures of her head. I know things have changed. Because of her energy, but more importantly because of her speech. During the last day, its become garbled, almost like a mush mouth? Its like she is having a hard time pronouncing words. She is also speaking slower. Im pretty scared on what those images are going to show. Last November, her Oncologist gave her 6-12 months to live. We kept choosing small goals to achieve. Lets get to her birthday (we made it!), lets get her to school (we made it!). Now, I would love it if we could get her through Halloween. I cant imagine a better Elsa.... :)
Posted on: Wed, 17 Sep 2014 23:03:57 +0000
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