Happy One Month Birthday to my little peanut Khloe. She is doing so well. I never thought in my wildest dreams that I would get to take her home much less get to spend so much time with our little miracle. She has been a true blessing for our entire family. We are savoring every second with her...Kadence has shown us some jealous sibling rivalry already. One day Kadence got off the bus, and wouldn't come in the house. She sat outside in the front yard and yelled I am not coming in the house because Khloe is in the house. Thank goodness my mother in law and my father were at the house. They convinced her to come in the house especially because it was on one of the really windy days last week.
I haven't had much sleep lately, but still enjoying every second with Khloe. An update on her head...it is almost healed completely on the top. Maybe another week and there should not be any open wound spots. No bone has grown in, so we will have to deal with that when the time comes, but all the skin growing in is pink and hair is already growing on the top of her head. She is now 7lbs 5 oz, and growing at her own rate. She amazes me everyday. Soon we are looking at a "G" feeding tube that goes directly to the belly. This should be more comfortable for her, but will require a surgery and we will meet with doctors soon to figure out when she will be ready for the surgery. This tube will be better as she keeps pulling out her oral feeding tube, and the nurses have to keep putting it back. The "OG" feeding tube is not very comfortable for her as it is so dry in her little throat. :(
All of us are doing well and hanging in there. Kurtis is back to work, Kadence is doing well in first grade and I am enjoying my time at home with Khloe. I know this journey is hard to walk as we all know Khloe's condition in terminal, but having all the love and support around us really does matter. Thank you so much for your prayers and kind thoughts for our family. :)
Hugs,
Sandy
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