Day Nine-December 14th

We need your prayers now more than ever.

Rylan is scheduled to go back home tomorrow morning. We just got the results back from her newborn state screening this evening. Rylan has been diagnosed with a very very rare disease called Maple Syrup Urine Disease. This explains why she has struggled to eat over the past week. She is unable to process protein. She is on the lower end of the spectrum, but we have been informed of the worse possible scenarios to prepare us for what might be to come.

I knew it wasn't good when a swarm of doctors and nurses came rushing in and started drawing blood, starting an IV, and putting in a cathater. It is a rare genetic metabolic disease that 1 in 50,000 people have. Only 4 doctors treat this disease in the state of Texas. Thank God 2 of the 4 are in Houston, TX. I feel so blessed to have the medical center capital of the US at our fingertips! The neonatologist here had never heard of it, so he called Baylor- they had never heard of it either. TX Children's did some research, and have 3 doctors in on this case now. It is a disease that can leave her mentally retarded if not treated correctly, and can quickly lead to death. They had to take platelets out of her today to Fed Ex overnight to Dallas, and we will know tomorrow whether or not it is definitely positive. If so, they want to life flight the both of us to Houston to Herman or TX Children's Hospital to be treated immediately. I asked why life flight was necessary, and he said, "I don't want to alarm you, but I feel like it's better to be honest with you up front so you can be ready to go tomorrow if need be and be composed. Rylan's life could be in jeopardy if it is not treated right away."

My heart is breaking for her right now, as she is being poked and prodded all over her body. Thank God Blake's sister is here with me right now.

I'll give more details as soon as I know something. Please please please pray for her. We know that God is bigger than this disease, and can heal her.

Casey