Thank you everyone for your thoughtful posts; I didn’t mean to sound so discouraged in mine. In fact, it’s quite the opposite. Lily continues to progress. She has her ups and downs with various health issues but overall she is doing well. And she is getting better. And she continues to amaze us. But honestly some days are tough, actually most days are tough. It’s tough when she is uncomfortable or sick and we have to figure out how to help her, or when I take Charlotte to school and I have to leave Lily at home, or when I see kids playing and running and just being kids or when we enjoy a nice meal or even a bowl of cereal while she can’t . . . I’m sure you get the picture. But in the big picture I am ecstatic and forever grateful for every moment of every day I have with her on this earth because 9 months ago we almost lost her, twice.
Last week was Spring Break for Charlotte. I took the girls to the Long Beach aquarium and I even took Lily on the Ferris Wheel at the Irvine Spectrum (the new photo was taken at the top of the wheel). We also headed up to Mammoth for a long weekend. We enjoyed some mountain fresh air and soaked up some sunshine while we watched the skiers and snowboarders from the deck at the Main Lodge. Lily loves to ski and loves to ski fast…her ski instructors named her Lily “Lightning” Needham. Thursday Lily will join her 4th grade class on a field trip to the Pilgrim tall ship, part of the Ocean Institute in the Dana Point Harbor (one of Lily’s favorite places to visit). They have an overnight field trip aboard the ship and the staff has made special provisions for Lily to come aboard as well. (However she wont be spending the night). It should be a nice surprise for Lily, I look forward to her smiles when she gets to ring the ship’s bell.
Thank you for your thoughts and prayers…we feel your love and support and it really, really helps us on the journey.