Lydia was released from the hospital on Tuesday. She was so happy to come home and was feeling much better than when she went in. She went back in for an outpatient infusion of antibodies on Friday. She will go two times a week for infusions of meds or chemo for at least the next few weeks. So far she seems to be handling the chemo quite well. She seems somewhat subdued some days, but has had no other apparent side effects. She could still have other reactions with future doses, so for her next infusion of the main chemo they will admit her for one night to make sure she handles it ok. There is a possibility that she could lose some or all of her hair, but it's a smaller chance since it's a low dose chemo. I love her curly hair, so I'm really hoping she doesn't.
Thank you all very much for your love, prayers and support! It really helps us get through the rainy days.
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!