Lyd's is officially done with her feeding tube. Yipee!! She has been consistenly drinking enough fluid this past week and will take all of her meds by mouth. She makes a disgusted face everytime with one of the meds, but she'll do it with some chocolate bribery and a desire to not have the tube put back in her nose. Yeah, another big milestone behind us! It has been so great to have her feeling so well for so long. She has such a fun, dynamic personality. She teases, and laughs, and yells, and talks loud in church and gets into plenty of two-year-old mischief. She brings much joy to everyone that she is with. I am so very grateful that she is a fighter and that she has been blessed to be healed so well through knowledable doctors and nurses and through Heavenly Father's immense blessings!
After struggling so much with the pain she has endured (like I talked about in my last blog post), I learned a great lesson from the spirit. I had been struggling for a long time with trying to understand why Lydia had to suffer so much, especially since she was a baby who didn't know why she had to suffer and hurt so much and why me and Brian would allow her to be poked and hurt so much. As I was thinking about this and reading in the Book of Mormon, I read about a people that were very blessed and prospered, then Heavenly Father gave them trials that they could grow. As I thought about this the spirit told me that Heavenly Father loves each of us very much and sends us to earth and gives us trials and sickness and pain for our good and so that we can grow. The spirit witnessed to me that Heavenly Father loves Lydia and has a purpose for her, part of which includes her pain and suffering. This was a very comforting and healing lesson to me. I am very grateful for Heavenly Father's plan for us.
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!