Check out Grace's pretty new mitral valve! This may look like a picture of outer space to you and if it does, that's ok, just celebrate along with us anyway :-)
Dr. Morris (her cardiologist) had to actually close her eyes, hold the stethoscope ear pieces further in her ears, and really focus to hear Grace's heart because it was so quiet! The reason that this is so significant is because in the past she didn't have to work hard at all to hear Grace's noisy heart (murmurs, gallop, etc). Her chest x-ray looked great compared to her previous x-rays. There is still some fluid on her lungs and her heart is still enlarged, but she said that's common for all that she's been through and they both take a while to heal, so over time we should see improvements. It's hard to believe that Grace isn't on any heart medications now, except lasiks, and the only reason she's not weaning her on the lasiks right how is because she doesn't want to do it at the same time that she's weaning all of her heavy duty pain medications because if there are side effects, it's hard to distinguish the cause. It's crazy to think that she may go from 8 medications, given multiple times a day, to just 2 in the not too distant future. God is already SO GOOD, but the cherry on top will hopefully impact kiddos like Gracie now and in the future. Dr. Morris said that because of us, one of her colleagues and a fellow are interested in looking into their (TCH's) data over the past 10 years of kids with Up's and a single ventricle to assess their outcomes since nobody in the department knows. The results of this study that they are doing could radically change the way they treat patients like Grace moving forward. After all, a recent study published in 2010 found that the mortality of children with Up's and a Fontan (single ventricle) are 2.5 times greater than a "typical" child. The conclusion of that study states, "Down syndrome was found to be an independent parameter associated with a significantly higher risk for mortality in the early postoperative period after Fontan surgery." We are continually humbled and grateful that God would allow us to be a part of a much bigger and more important picture than what we can see right before our eyes, at this moment. We shouldn't be surprised because we know that He is SO much bigger than what we can wrap our finite minds around, but we remain in "awe" of Him!
These two silly sweeties make life that much… sweeter :-)
We know that this journey is far from over, so thank you for both rejoicing with us and praying us through this Divinely designed roller coaster! Please continue to pray for health and healing for our family (especially our Gracie Doo)! We love and appreciate you, sweet Village!
GRACIE STRONG (In God's strength)