Chloe Grows and Grows! 12-14-09

Dec. 14th, 2009 Gosh, time is just flying by and I feel like I haven't stopped moving in days! It was Friday when I went to visit Chloe, Monday has now almost come and gone! I do believe some of it is that Christmas is so close and there seems to be so much to accomplish. Christmas programs at school, writing cards, getting the tree up and lights on the house all are fun, but added minutes in otherwise full days! Getting to Jennie and Lance's house and spending time with the family is delightfully wondrous and blessing filled. Chloe's first Christmas! Can you imagine that on the 20th, little Chloe will be eight months old? She has now been home about a month, what a time of adjustment and growth! Physical growth and development is incredibly apparent just by watching her for a few moments-Chloe is so much more active and engages in so many activities, some precipitated by others engaging her, some of her own doing! She loves to wave and clap now and even though she has always enjoyed it, she now really seems to help me when playing Patty Cake! Tickling her sweet little feet, or covering them with kisses brings wide and numerous smiles! Numerous smiles were the highlight of the day for me and Jennie said they were not in quite such high numbers due to her teething. Yes, two teeth popping through now and they are bothering her just as they would any baby! She loves grabbing a hand and cramming it into her mouth in the hopes it will bring comfort! It was so much fun to watch Jennie doing Chloe's physical therapy with her, at that time of day it was practicing sitting up and strengthening those muscles! Chloe is getting stronger and stronger and can hold a sitting pose much longer than before! We had such a moment of laughter as she was practicing. Jennie was sitting with Chloe between her legs and letting go at short, then longer intervals. At one point, Chloe started to tilt over on her side, literally in slow motion, and landed with her little head right on Jennie's leg. She seemed absolutely content to stay there and actually closed her eyes and looked as if she would fall asleep. SO sweet! Sleep was not to be had though and she proceeded to show off her newly learned skills to me and to her great-grandma. Talk about sweet, my Mom is 85 and Chloe finds such sweet, loving comfort in the arms of her Nana. They offer so much love to one another, it is a beautiful thing to witness! My visits are always too short and I needed to move along in the day, but not without learning one more thing! I had lots of lessons at Children's Hospital, but had never changed out the Nissan Feeding Tube. No getting around these things and since it is only changed every 2-3 months, Jennie wasn't letting me leave without the really quite short lesson. These things are experiential in nature and I am a hands on learner, so what the heck! The thing that once again amazed me was my daughter's level of knowledge and ease in doing what would literally be impossible to some! Chloe is fed through a tube that is placed directly in her stomach. Early on, various ways of feeding her were attempted, but through every trial came some sort of difficulty and the final decision was to use the Nissan. So, it is literally a tube that fits into her stomach and her formula is pumped through the tube to the stomach. Eventually, the food will be different, blended fruits, rice and vegetables..whatever babies eat, just food processed to liquid consistency. The food is pumped in and when it is gone, the tubing is taken away, a little button covers the opening and feeding time is done! I had to learn what to do in order to replace it if there were ever a need, mostly in an emergency like Chloe pulling it out. I guess kids do! There are SO MANY things we all take for granted when our children are healthy, me included! Sucking a nipple, a bottle, a pacifier, swallowing, being burped! Until Chloe, I had no idea that so many of the things I did with my kids and grandkids were really huge blessings not experienced by everyone! Science and medicine save so many children with miraculous amounts of new knowledge and new technology. We feel tremendously blessed to have had Chloe in today's modern era! Of course, all of us here know how far the power of prayer goes and also the importance of having a strong and willing Warrior spirit. Our Warrior Princess has shown more courage than I could ever imagine conjuring up myself! I am as grateful to each of you as I am to the medical teams we have encountered along the path so far. It DOES take a village, and so far, Chloe and all of us have quite a few friends all over the globe helping this journey to be successful and positive. I have had so many questions about Chloe's diagnosis and since losing my past posts I am trying to throw in a bit of history as I write each time. Luckily, Jennie just happened to give me an opportunity to explain feeding this time. Next time I will tell you a bit about some Christmas angels and more about Chloe's early life. For now, thank you for being here! I would LOVE to make that 4,000 member mark, it has been a tough one to reach! Please continue to ask friends and relatives to join us here. Chloe's long journey has just begun! All my love, Nancy