As many of you know, Annie was seen at the Cleft & Craniofacial Clinic at KU Med on June 7. The appointment was long (almost 2 1/2 hours) and overwhelming BUT good. The Cleft & Craniofacial Clinic is staffed with expert physicians in plastic surgery, pediatric nerosurgery, pediatric dentistry, speech & language pathology, and others--Annie was seen by a handful of these experts, including Dr. Andrews, the craniofacial doctor we first met in the NICU. We did not really get any new information, however, we did find out that Annie will have the first of many surgeries when she is 6 months old (yikes!). Dr. Andrews has informed us that he will want Annie to have another CT scan when she is 5 months old to determine which surgery he will do first. Although we trust and feel comfortable around Dr. Andrews, we have an appointment with the Cleft and Craniofaical Clinic at Children's Mercy on June 27--it never hurts to have a second opinion.
We had an appointment with Dr. Ardinger at the Children's Mercy Genetics Clinic yesterday (hooray for cancellations!) and got information back on Annie's genetic testing. Dr. Ardinger informed Chris and I that all three test that they ran came back negative--obviously this doesn't mean much except that the genes they looked at did not show any mutations of the syndromes they tested for. Dr. Ardinger believes that Annie has one of two syndromes but needs additional DNA testing to confirm. As of right now, we will have to wait on our insurance company to approve (or deny) the additional testing. If they approve the testing it will be approximately 8 weeks before we have any results. Please pray our insurance company approves/covers the tests!
On more exciting news...Annie is 6 weeks old AND weighing in at a whopping 10lbs and 10oz! My girl sure knows how to eat! Annie has also been sleeping in her own room for the last 3 weeks or so. I thought she would have stayed in our room longer but the girl is the LOUDEST sleeper and I gave her the boot! I think it's safe to say that Annie is loud the majority of the time and comes by it naturally--she is her grandmother's granddaughter.
Annie also had some very special visitors come to see her--she is a lucky girl to have so much love!
