Thursday, December 23, 2010

Baltimore Bound!

Just wanted to write a quick update discussing the dates we will be in Baltimore. We were offered the dates Dec. 14 or Jan. 14 for an echo-cardiogram and meeting with Dr. Dietz. We decided on the January 14 date for a few different reasons. First off, Dr. Dietz is in clinic on December 14, so he will be meeting with a lot of other patients and we would practically have to be squeezed into the schedule. On January 14, Emri will be his only patient. We also have an echo-cardiogram coming up on December 8, so we will be able to know the status of her heart. If we are not comfortable waiting until January AFTER the echo, we will be seeing Dr. Dietz as soon as we can get to Baltimore. SO we are of course praying that the results come back stable as they did last time. We have a HUGE day in Seattle coming up on the 8th. We have a full schedule of appointments starting at 8am, and ending at 5pm, when the hospital closes... Emri will be seeing a number of specialists including a PT, OT, 2 MD's and her heart doctor. Needless to say, the day will be a busy one but will hopefully bring answers to a plethora of questions we have been accumulating. 
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:) 

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