MIA

Yes, it has been a little while since I have posted. Things just seem to get crazier and crazier around here and I feel like I can barely keep up let alone post anything about it. But, I thought I would take a minute and update on what has been going on in our family. This last week we took a life changing trip to Salt Lake City. Many of you know that Reeve has Marfan's Syndrome which is why he is so tall and skinny. He has had some major reconstructive surgery on his back and chest and a few collapsed lungs along the way. We found this wonderful new Doctor at Primary Children's Medical Center who is a cardiologist specializing in Marfan's Syndrome and we felt like we needed to have Reeve go to her and our boys as well. It turns out that Tolman and Kimball both have Marfan's Syndrome like Reeve. It also looks like Reeve will have to have open heart surgery in the future to replace his Aorta which is growing too big. For now he will have to take medication to slow it down and hopefully if it is responsive he won't need the surgery for a few years. Tolman and Kimball will both have to take medication as well for their enlarged Aortas but hopefully because we are treating it so early they may never have to have heart surgery. Obviously we will have other challenges down the road but for now we will just take it one day at a time. So far so good for Eden, while we were there they also took a quick peek at her heart with the Echocardiogram machine and her Aorta is normal sized for now. When she gets to be 3 or so we will do the full test for her to see if anything has changed.

Amid all of this overwhelming news Heavenly Father has sent us a tender mercy in the form of a
research study that the National Marfan Foundation is conducting and our two boys fit the criteria. They are testing two different heart medications to see what works best. They will pay for the medication and for our medical care (like echocardiograms and Dr. visits) and also our travel expenses and lodging to and from Salt Lake City. It is a three year study and if all goes well all of this stuff will be taken care of for that long. That will be a huge blessing.
As crazy as all of this sounds we really have been blessed. Our children and Reeve for that matter can live normal lives and we just need to keep up on their preventative care to save them from anything life threatening.

I have felt the strength of the Spirit sustaining me and Heavenly Father's love for me and my little family. Yes I have had my emotional days already and I am sure there will be more to come but I was grateful for my mother-in-law's advice to take things one day at a time. Reeve's parents and his sister Templ helped us so much while we were at the hospital doing tests and such I am so grateful for their support and love. I don't think we would have made it this weekend without them.

Sorry for such a long post. If you stuck with it and read all these ramblings you deserve a treat! Thanks for being such a trooper!