Monday, July 18, 2011

We are now Marfan Experts:)

Wow. Brett, Emri and I just returned late last night from the 30th annual National Marfan Foundation conference in Portland, Oregon. We are overloaded with information on Marfan's and overwhelmed with thankfulness for the people we met and connected with at the conference. Let me start from the beginning. We headed down to Portland Wednesday night and made it safe and sound to my Aunt's house (THANKS Aunt Hilly:) in Beaverton, OR. Thursday morning was Emri's Echo at Shriner's Hospital for Children. We had to wait till Friday morning to find out that Emri's echo is once again STABLE! Her average aortic measurement ranges from 21-24mm which the cardiologist at Shriner's informed us is the standard size of an adult aorta. Her aorta is big, but as long as it remains stable, no action is required. "Stable" has become my new favorite word! We learned at the conference that surgery becomes a reality when the aorta of a child or adult reaches 45-50mm. She still has mild mitral valve regurgitation, but it has not progressed enough to enlarge her heart which is when it becomes an issue. Dr. Cameron, the heart surgeon from Johns Hopkins, spoke at the conference all about aortic root replacement and valve sparing/replacement operations and we now understand more about the options we have if surgery ever becomes a necessity. We had the opportunity to speak face to face with many of the worlds leading doctor's and surgeon's in the realm of Marfan syndrome.

Meeting and connecting with other individuals with marfan's or those parenting a child with marfan's was probably the highlight of the entire conference. It was so refreshing for me, as a mother of a child with marfan's, to speak with other mothers that have gone through so many of the same emotions and frustrations that I have trying to attain information and find the best care for our children. Brett and I had the opportunity of connecting with parents that could let us in on the struggles of older children with marfan's and the frustrations they have with other kids and siblings because of marfan's. We became especially close to one family in particular that have Ethan, a 9-year-old boy with marfan, and Christopher, a 7-year old without it. They too had never heard of marfan's before Ethan was born. Emri and Ethan are both in the more severe catagory of marfan's which is why I feel our families connected easily. The Johns' were an amazing family and Brett and I were both inspired by their desire to make things the best they possibly can in their situation. Ethan and Christopher were very sweet brothers and some of the stories their mother told me about their love for each other melted my heart! We will be staying in contact with them and can't with to see them at next year's conference in Chicago! I also FINALLY got to meet with a person that has been a mentor for me throughout this past year-Maya. I was so excited to finally meet Maya, Mark and their handsome boys! We ran into many other people that I have been connected with throughout this past year including Alix and Traci; moms of a precious little girls that remind us so much of our little Emri. Alix organized a huge run this past year, raising over $40,000 for the NMF! It was such a blessing to finally get to hang out with and talk with these wonderful, inspiring families and individuals!

Emri made a new friend named Ashley at the conference. Ashley is a teen with marfan's and actually just two months out of heart surgery! Throughout the conference Emri and Ashley became pretty good buds. It was very fun to see them interact and know that in the future Ashley could potentially be a mentor for Emri as she gets older and has to deal with the realities of growing up with marfan's.

All in all, the conference was an absolutely amazing and eye-opening experience. I was reminded again that marfan's is nothing to take lightly. I struggled a little with seeing a lot of kids and teens that didn't necessarily have a severe form of marfan's like Emri. I have learned that there aren't many individuals with marfan's that exhibited all the signs of the disease at birth. Emri deals with so many issues already as a baby, and that is sometimes hard to swollow. Many people at the conference had a hard time even achieving an actual diagnosis because they didn't exhibit enough signs of marfan's to be officially diagnosed. Emri has it all from the long fingers and crooked back to the mitral valve prolapse and severely enlarged aortic root. As Emri's mom, I know that the road ahead will be long and bumpy and it a lot of times is painful just to think about the things Emri may be faced with as she grows older. Thank goodness we have a God who promises us that it is all for the good of those who love him. We will struggle here, in this life, but can always look forward to eternal life with HIM in heaven, where we are promised life without pain and an eternity with not one tear.

"The LORD is the everlasting God, 
   the Creator of the ends of the earth. He will not grow tired or weary, and his understanding no one can fathom. 29 He gives strength to the weary and increases the power of the weak. 30 Even youths grow tired and weary, and young men stumble and fall; 31 but those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint." Isaiah 40. 28-31

1 comment:

  1. i LOVE this last picture!!! beautiful! i'm glad you got to know ashley too. i just love her. i'm very glad we got to meet you guys in person. :-) i think the scripture you quoted is so apt when thinking about living with marfan. knowing of God's love for us and His plan makes it easier to get through the difficult times and it makes the beautiful times that much sweeter. we're blessed to have you as friends.