We are all snuggled into the Ronald McDonald house and Kylie is sleeping peacefully. When we walked out those hospital doors the first thing Ky did was point and say Ooooo!. I thought she would be terrified since every time we go up to the balcony she freaks out when the wind blows on her! We had fun looking at the trees, the cars, a big bus, all the people, and even a plane! Kylie noticed the plane and pointed it out to us yelling Mama! When we walked into the Ronald she got a little scared. She covered her eyes with her arm and yelled Go! BUT as soon as we walked into our room she lit up so bright with a smile! Our room is covered in toys, so that was a nice welcoming home surprise for her. I made up her crib with all her favorite stuffed animals and water. I laid her down and she was out within 5 minutes! 10:00 rolled around and the home care guys finally showed up. They brought us all the supplies we would need and showed us how to hook her up to her fluids and TPN. So even though she is out of the hospital, she still has to be on IV fluids constantly for hydration and electrolytes. I think our girl feels safe here already. I couldnt believe how fast she fell asleep. It made me feel so good. It so now being here as family. Oh and have I mentioned how incredible this bed feels!!! Im gonna sleep like a baby tonight! Tomorrow our day starts nice and early at 8 am. We have to go to the hospital so Kylie can drink her contrast for her scan at 12:00. She will be having a CT and MIBG scan, as well as a bone marrow biopsy. As long as she is still NED we get to continue onto the next phase of treatment! Thank you all so much for continuing this journey with us. We wouldnt be where we are today without each of you! God bless! Psalm 30:12 That my glory may sing your praise and not be silent. O Lord my God, I will give thanks to you forever!
Posted on: Thu, 18 Sep 2014 02:59:21 +0000
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