What a wonderful, hospital-free fall we have had!! We feel pretty much back to normal with Lydia doing so well. She is a smart, strong-willed, life-loving 3 year old. Our family did get the flu last month, but Lydia pulled through it without having to be hospitalized. It was wonderful!
With the celebration of the Thanksgiving holiday, I have thought a lot about the first couple of Thanksgivings of Lydia's life. She was in the hospital for her first surgery (the Kasai procedure) for her first Thanksgiving. That was the beginning of a long, arduous road for her and our family. My heart was very heavy on that day. I was grateful for kind and caring hospital workers and for loved ones (the Olsen's) who came to visit us.
On her second Thanksgiving, she was gratefully not in the hospital, though she had been several times thoughout the previous year and would often be following that day. We spent the day with my family in beautiful Eden. We had a delicious Thanksgiving breakfast at my mom's house. We then went to the beach of Pineview Reservoir for a paper plate turkey shoot. Following the turkey shoot, we went to the white church in Eden for a delightful Thanksgiving dinner. That day was a day of healing and hope for me as we enjoyed regular conversation and fun with loved ones in the midst of turmoil in my life. That day stands out to me as a great tender mercy which helped me through many more tough days ahead.
I have so very much to be thankful for! Even in my darkest hours, I knew I was loved and watched over by Heavenly Father and his angels.
Spenc and Lydia enjoying some brocolli (at least the taste of it for Lydia since she just sucks out the flavor and spits it out)
Shortly after birth, Lydia was diagnosed with a rare liver disease called Biliary Atresia. This is when the bile duct is blocked or too small, causing bile to back up into the liver which causes psorosis of the liver. When she was 6 weeks old, she underwent a surgery called the Kasai procedure in which they removed her bile duct and attached her small intestine to her liver in its place. This was in hopes that her bile would be able to flow properly and her liver would function properly. As weeks and months passed after her Kasai, it became evident that there was already too much damage to her liver and she would eventually need a liver transplant. She is now 15 months old. She continues to show signs of psorosis of the liver with a variety of symtoms. One of her main struggles for several months was not being able to grow because of malabsorbtion of fats and proteins. She has been on IV nutrition for a couple of months and it has been helping a lot. She was stuck around 13lbs. for several months but is now up to 16 lbs. If she puts on a couple of more pounds, she will be big enough for the portion of my liver that they could transplant to her. She is a very sweet, precious baby. I call her my "sweet angel baby" and she is!