It was really hard to be away from Eden, even for the few hours, especially seeing all the other kids running around having a great time. (They encourage the families to attend.) We noticed another little curly red head, and I think we both saw an older Eden, which made us miss our little girl even more. While Eden did not get to attend in person this year, she definitely participated in the family room on Saturday. You can see her cutting a rug with Kurt during the televised Dance Marathon. (Hope you may have also been able to catch a glimpse on TV.)
Saturday started the day by Eden telling dad "no pokes"......and she was right!! Since the weather was unseasonably warm, we took advantage of it and hit the back streets for a long walk. It was great for all of us! The fresh air did us all some good as this was Eden's first time out of the house. After the walk, she took a 3.5 hour nap(a total anomaly)! Mom and dad even got a nap, which was wonderful.
For breakfast Sunday morning, Eden was requesting "bread" - which was the homemade wheat bread our neighbor, Eva, brought us. Eden loves Eva because Eva spoils her each time we walk down to visit. After the bread, Eden was requesting "meat" - which was the left over turkey burger from the night before. About an hour after breakfast was over, she decided she needed some soup. Have you noticed that everyday we are writing about food . . . it occupies a great portion of our day? That reminds me, a funny story about "the soup". We were reading books last night and the book "Spot Visits his Grandparents" has Spot eating cookies out of the cookie jar. I asked Eden if she liked cookies her response: "no, soup." Rochelle's soup is currently at the top of her list.
Please pray that Eden gains some energy . . . also, Friday is a big day for us: bone marrow, spinal and chemo. They will also be testing to see if she is in remission. So please pray for her healing.
Ahh, I've finally tracked you down. Sorry, I lost your phone number. You are always welcome to reach me on my office cell. I have a lot of '5 stars and you get a prize' gifts for you. Dexamethasone at our house went down best as tablets crushed, dissolved with a small amount of water and mixed with 10-15cc of pancake syrup. The same with the sulfa. After the first month, we gave up on the liquids since they all seem to taste so foul. The night before procedures, when Rose was on steroids and NPO (certainly a new level in Dante's inferno!), we would keep her up until 11:30, feed her, then put her to sleep. The next morning, we would get up as early as we could and get up to the U. It doesn't really matter when your appt is, they'll take you close to when you get there. By doing this, Rose slept on the way up, and there wasn't quite so much 'hungry time'. Our response to food requests was 'It's cooking.' Eventually, we had to change it, because Rose wanted to know where the kitchen was (at the U), I think so she could show them how to cook it FASTER. I'm out of town Monday and maybe Tuesday, but should be back in town starting Tuesday night. Feel free to call us! It is certainly is NO imposition. Here is a digital scrapbook page I made of Rose's experience her first week after diagnosis
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It was a nice day Saturday, glad you were able to get out and enjoy some fresh air and sunshine. Glad to hear the weekend went well. So look forward to each new message you post. We will be thinking of you all this week and adding special prayers as you approach Friday and the tests and chemo. Jesus has you in His loving arms and will be with you and see you through the day. Our love and hugs, Aunt Mary and Uncle Heinz
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