Liliana Sue

Sorry it's been so long since I last posted. Things are busy as usual. We did get Liliana out of the house for a halloween party. It was put on by employees of the hospital where she was born and spent the first few months of her life. They invite all "NICU Graduates" and families to attend. She wore a ladybug costume but we do not have any pictures at this time. We took our camera with us, but got so wrapped up in all the excitement that we forgot to snap some. One of Lili's nurses took some pictures, so hopefully we can get them from her. We should have some of our own pictures after halloween. Lili is going to wear something different, but I won't tell you what it is just yet. You'll have to wait for the pictures. We won't be taking her anywhere, but she should have fun helping us pass out candy.

Liliana had some blood drawn a month of two ago for genetic testing. There were two different tests. The first one came back negative. The second, which was an ACTA1 genetic sequence analysis came back positive! This is consistent with her diagnosis of Nemaline Myopathy and we now know exactly where the mutation is. Now that this is known, they want to test LeeAnn and I for the same genetic sequence to see if it was passed on by one of us, both of us, or if it was a sporadic mutation. This information will help us make decisions about our future and the possabilities of this happening again if we decide to have another child.