May 26, 2014 Day 23 Memorial Day. Today started out hectic. I attribute this to lack of sleep (from Lilly eating every 2-3 hours) and trying to appease three kids, but we made it through breakfast in one piece. Lilly has been VERY moody and it is hard to reason with her at all. She has been complaining of tummy pain, leg pain, and watery eyes. She has once again digressed and doesn’t want to walk as much. However, despite all this she wanted to go the museum with Callie and me, so Jake and I decided to take the whole family. This didn’t make Callie that happy, but I told her that when we got to the museum we would split up and have our own little Mommy/daughter date. The museum was wonderful. We went to the Maya exhibit and were kinda regretting it. Not because it wasn’t cool, but because it was a lot of reading and while Callie can read, neither one of our kids are at that level of reading. It was cool seeing the different artifacts, and the intricate lifestyle of the Mayas. Lilly only made it about 35 minutes and then wanted food, so Jake and I split up. At this time, Callie and I had fun using a photo booth exhibit to make us “Mayan.” Callie also got to learn to weave. It is amazing the intricate patterns used. I do not know that I would have the patience for that. After the Mayan exhibit, Callie and I went to explore our bodies in the health exhibit. We each got a “body pass” and then went to different exibits measuring our body function. It was really fun and I enjoyed spending time with Callie. Jake, Lilly, and Paisley enjoyed spending time eating food. Following the museum, we headed back to the RMH. Lilly wanted her “lunchables” (kidcruisines) and we were out, so I made a run to Safeway by myself. While I was there, I got a text message from Jake stating that we were only allowed to have two children stay with us at the RMH. I was CRUSHED! The last three weeks have been very stressful worrying about all of my children’s well-being, and even though adding another child was more stressful on me, I could control the circumstances and provide stability. I will admit I was in panic mode. When I arrived back at the RMH, the Starbucks (Jake’s sister/family) were there. They brought pizza and Becca graciously volunteered to let Callie stay with them as long as need be. They live in Conifer, so Callie is only 45 mins to an hour away from me and she gets to play with her cousins. While I would prefer Callie to be with me, I think this will allow her to have more of a summer. She will get to go outside more, swim, jump on the trampoline etc. I am going to drive up the mountain once a week and Becca will come here once a week. When Jake comes he may stay at his sisters so Callie can have her Dad, but we will take it as it comes. We are grateful for the Starbucks and their willingness to help out. The Starbucks left around 4 pm and Jake and I picked up the room. I then started my Jillian workout and got half way through when the Freeloves arrived. They brought us a bbq dinner and it was SOOO nice to talk to one of my friends in person. Thank you for making the sacrifice to visit us. I do not know what I will do when your family moves to Texas! The rest of the evening was spent looking at REI and target. I had thought about getting a jogging stroller to help “lighten” my load (Lilly has gained almost 6 pounds in a week), but couldn’t find one that would comfortably fit Lilly. It was nice pushing the jogging stroller as compared to my sit in stand, but all things considered, at least I have a double stroller. I can’t imagine getting around without it these days. We made it home around 9:00 pm and wound down for the night. Today was rough, but we made it through and it DID have positive highlights. We have learned to focus on the good. If we don’t we would be on a slippery slope downward. Only one week left of Lilly’s dexamethasone and two more chemo treatments before we are done with the induction phase. As my Mom always says—how do you eat an elephant? ONE bite at a time! We will make it through this challenge! Thank you to the Starbucks and the Freeloves for lightening our load today!
Posted on: Wed, 28 May 2014 03:15:17 +0000
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