I wanted to add a quick note answering a question Brett and I have both been asked many times. The question regards our future children and their chances for also having marfans. Emri is said to have achieved marfans all on her own, with no help from either Brett or my genes. The doctors have dubbed it a spontaneous mutation and they have told us that we have a less than 1% chance of conceiving a second child with the same condition. The reason the doctors say that Emri's mutation is spontaneous is because of the fact that if she got the gene from Brett or I, you would be able to see the physical signs of marfans in the parent that she inherited the gene from. Brett and I both lack any physical evidence of having marfans. It's crazy to think that Emri is 1 person out of 10,000 that have a severe form of marfans and that the mutation just happened...but we like to think it wasn't really spontaneous at all. It was all in the plan. God has a special place for our little Emri, and His plan for her life has only just begun.
In light of the day of thanks we celebrated last Thursday, Brett and I would like to say that we are overwhelmed by the thankfulness in our hearts for our little girl. God has abundantly blessed us with her, and we wouldn't want it any other way. We also need to give thanks for our wonderful doctors. Emri's primary care doctor and his wonderful nurse have been such a blessing. I am on the phone with nurse Kim A LOT and she is always willing to talk! Dr. Bochsler couldn't be more caring and understanding. He wants the best for our little girl and it's so easy to see that. God has set us up with some absolutely amazing and talented individuals.
We are so privileged to be the parents of such a beautiful little girl, and so humbled to witness how God is influencing our, and so many others' lives through His little 11 pound Emri. We will continue to update! We hope all is well on your end, and ask to keep the prayers rolling:)