Got a call earlier from Dr. Friedman. He got the “results” from the radiologist who reviewed the MRI. A quick bullet list version:
- He is still sticking for now to the Restrictive Cardiomyopathy diagnosis. Unlike the pathologists diagnostic version of Hypertrophic. (Which is more commonly seen in young people)
- He is ruling out the common causes of Restrictive Cardiomyopathy: Amyloidosis, Sarcoidosis, and similar. He thinks that it is a more rare cause of some genetic culprit. Speaking of rare, in doing some of my “research” last night I saw a statistic (who makes those up though?) that this type of cardiomyopathy is super rare in persons under the age of 18. 1 in 100,000. Our girl is a unicorn! Which explains more of why the doctors are clearing the schedules and being extra attentive and awesome. As Ceara and I joke, instead of watching Grey’s Anatomy patients, she IS a Greys patient!!!
- She has scarring in the middle of her heart muscle. Not sure the extent or prognosis of that just yet.
- They will be taking a biopsy of her myocardium during the heart cath. He explained that as no big deal.
- LOTS of genetic testing is coming her way. He is working on who can get us in the fastest at this point. They’re quite backed up in Asheville according to Dr. F.
- He chatted for a bit and praised us 3 for how we are handling things. At least outwardly he says! I shared with him that it’s been a struggle and is quite honestly getting harder by the day.
Specific prayer requests: pray for mental strength and Grace during this time. Especially for Ceara. She is revisiting her high school/college schedule and may make some cuts. She’s struggling with staying positive. In her school life and mentally in general. Von and I could use similar support as well. It’s hard trying to keep things as normal as possible now for the younger siblings. School, cheerleading, and football are all starting at this current time and we are trying to navigate our way through that on top of making sure we are 100 percent for CC.
Speaking of navigating, we forced this unicorn chick to hike a volcano just a couple of months ago!! We are probably the reasons for the scarring! Check out the stats of the hike in the photo attached! She is WAY tougher than any of us could have ever imagined.
Thanks for holding our hands through it all. And lifting us, especially Ceara, up to the Great Physician. We are putting our trust in Him. Although I am the first to admit it is all SUPER scary still.
-Ashley