Happy 1 Month!!

Happy 1 Month Birthday Charlotte!!!

So much has happened in one month and it has flown by. She has started to become more alert, making eye contact for longer periods of time and I wish I could report sleeping longer between feedings...but all in all she is a healthy, thriving, beautiful baby girl and we couldn't ask for more!

                                                                                    

We heard from Texas Children's Hospital on Friday with the results from the research and tests they did on Beaux. The preliminary results show that it was OTC that caused his death. This is what the doctors had suspected all along, but they wanted to be positive before they made a diagnosis. Our next step is to go to Texas Children's Hospital where I will be tested to see if I am a carrier. If I am a carrier then they will continue to do testing on Charlotte to see if she is also carrier. Most likely I am a carrier and have just lived my whole life with out exhibiting any serious symptoms. Most likely Charlotte is a carrier too, but there is a possibility (although small) that she is not effected at all. They are waiting on a few more results from Beaux's testing and we will most likely go to Texas Children's at the end of March or beginning of April. 

We found this website www.nucdf.org to the National Urea Cycle Disorders Foundation. It is a great website that explains OTC better than I can. We still have a lot to learn, but this has been a good start for us. We have been in touch with the Executive Director of the foundation and she is putting us in touch with other families that have been in our similar situation. We are looking forward to meeting these families, even if it is only virtually, and hearing their stories and experiences with having lost children to this genetic disorder and then having children that live with this disorder.

Here are a few more pics taken in the last week or so:

We finally enjoy bath time!

Micah and his ladies

Getting stronger everyday