It's been a while since I blogged and not too much is new. Frank is still at Freeway Mazda doing his mechanic thing and I've recently gone back to doing on-call night and weekend hospice nurse. Mya Leilani is doing wonderful! She's started eating solid foods, sort of. There are times when about half of the food ends up on her face and bib. She rolls over from her stomach to her back and then back to her tummy agian. She's sitting up for about 10-15 seconds at a time before she topples over. She's is still the love of our lives and the center of our world. I'm still amazed at how much love we have for her and how much joy she brings us. Lately I've really been trying to educate myself on the different symptoms of VCFS (DiGeorge Syndrome) and how to recognize them and what we can do about them. For those of you that are interested in learning a little more about the genetic disorder that Mya has, a good place to go is http://www.friendsofquinn.com/. It's a place where kids with disabilities and their friends and family can go to learn from each other and share experiences. Everyone has heard that knowledge is power and that's what Frank and I are doing! We're getting the ammo to help give Mya all the advantages that we can and help her live life to her fullest potential. As fate would have it, I was walking through Barnes and Noble and happened to see a book on my way out the door titled "A Different Life" a memoir by Quinn Bradlee. Out of curiosity I opened up the cover and read the synopsis. It turns out that it's a book about the life and experiences of a man who has VCFS. This book has helped me see from his prospective what it's like to live with VCFS. It's a brave and honest book that I recommend to anyone. This book is what lead me to the website mentioned earlier.
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