Medical Update

About a month ago, our pediatric endocrinologist sent both Lily and Thomas in for some blood tests. Thomas' tests were because he isn't growing fast enough. In truth, our 9-year old boy still wears size 5T clothing. That's toddler size! Lily was sent as a "rule out different birth defects" test. Her blood work came back testing positive for testosterone. That means her little body has some type of organ that is producing testosterone. The endocrinologist conferred with Lily's geneticist and urologist to determine what to do next. (She had already had an ultrasound, but it was inconclusive). The team decided to send her to Boston for more in-depth testing. She was sent to Massachusetts General Hospital's Pediatric Urology department.

Yesterday was Lily's appointment. I arranged for two different child care providers, and packed Lily up for the two hour drive to Boston. I had never been to Mass General before, but I quickly learned that it is made up of several buildings interconnected by different hallways and elevator systems. I needed my GPS to find the Radiology department. I found it and got Lily settled for her ultrasound. I absolutely HATE ultrasounds because I want to know what the technician is looking at, but they NEVER tell me! After an hour on the table, we were sent up to Urology. Our appointment was for 1:30pm, but we never even saw the doctor until 2:35pm. I was pretty annoyed by that point. When they did call Lily's name, it was the surgeon himself who came to get us. Seriously! No nurse, or nursing assistant, but the actual doctor came to get us. (I should add that this particular doctor is the Chief Pediatric Urological surgeon, and is known world-wide for his skills.)

During the exam, the doctor explained everything to me in detail. He is the first doctor to actually diagnose Lily. I'm not ready to divulge just yet, but suffice it to say that she is looking at one major surgery next year. The surgeon has high expectations that she will be fine after surgery. He completely won me over with his knowledge and his attention to Lily. He sat with her, played games with her, and then sat with me to answer all my questions.

Lily will have an MRI in January to give the doctor a more detailed view of her internal organs. After the MRI she will have laproscopic surgery to remove an ovary. Finally she will have major re-constructive surgery. I know there are so many people who have more serious needs, but I ask that you pray for our precious girl. She will have to remain in the hospital for several days.

Six-Month Post Placement Report

Can you believe this is the same little girl who was made of toothpick legs and arms? Six months ago LilyBeth could barely walk, now I can't keep her still. She runs EVERYWHERE!

And that's the face that gets her into trouble!

Daddy did her hair. I'm such a lucky wife!

ON the medical front, Lily has undergone so much testing that she could get her own access badge to the lab. As a result of all this testing, we learned that she does have abnormal ovaries and her body is producing testosterone--as China said. We will be going to Boston to meet with the world's leading surgeon for this birth defect. We are so blessed to have health insurance. This could get expensive. Fortunately, once the surgery is complete we will have a complete understanding of her reproductive system.