Wow, I can't believe it has been almost a year since the last post. It has definitely been that no news is good news! Lydia has had an amazing (relatively healthy) year compared to the first three of her life. She had a couple of minor bouts of rejection, but they were able to correct those by adjusting her meds. She also had a few Immunoglobulin Infusions when her IGG levels would get low, which was residual from her Chemo. She was excited to get those infusions, though, because she loved the one-on-one time with me or Brian for 4 or 5 hours. She also was excited for the games, shows, popcicles and food she got to choose while she was there, not to mention doting attention from the medical personnel.
Now we have more good news. Lyds went to the Liver clinic yesterday for a check up and her blood pressure was good enough that Dr. Book said we could stop her blood pressure medicine. Yeah!!! She is now down to just her anti-rejection med.
We are so grateful that she is doing so well. Again, we want to thank everyone who has prayed and exercised faith in behalf of Lydia and our family, and helped us in so many ways. You have truely been angels to 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!