We had a great day yesterday! All of the specialists were so impressed. They decided to do lab work to see if Sadie has hypothyroid; a concern with patients with liver AVMs. Results came back fine. Sadie was so happy the entire time and made them all melt. We were there until 10:30 a.m. The doctors and specialists all met for an hour after meeting with us and decided to not meet with a genetics specialist to see about HHT. They said her two birthmarks on her head are not related to her liver AVM. She does have a very small hemangioma (smaller than the tip of a ball-point pen) on the back of her neck that will disappear on its own. Our surgeon, Dr. Lautz, went out of his way to say “hi”. He’s a really nice guy and was in his scrubs. We go back in July for ultrasound and to follow up with the surgeon again.
Tonight we head up to Chicago for an early 7 a.m. appointment tomorrow, February 17th at Lurie Children’s Vascular Lesion Center. This clinic meets monthly and Sadie’s case will be reviewed by over 20 specialists and will last approximately 3 – 4 hours. No scans or anything invasive will occur, they’ll review her past MRI and CT scan along with other medical records. This clinic will provide us with answers if Sadie needs to be evaluated for the possibility of other AVMs in more critical areas or her body (i.e. brain or lungs). Her surgeon informed us during our last meeting that the possibility of other malformations are slim. She was born with a birthmark on the back of her neck. A dermatologist is one of the 20 specialists we’ll meet tomorrow and they’ll be taking a look at that, too. The video below (click here if it doesn’t load) really helped me understand what to expect tomorrow.