This past year. Scout has been doing extremely well aside from a few set-backs and scares. Some time this summer, Scout had a few episodes of headaches where she was screaming in pain. From many trips to the ER, phone calls to the team in Baltimore, phone calls to her regular team here at Vandy, a hospitalization and (I think) CT scan (I can’t remember at this point), we found out that because of Scout’s neck instability, her spinal fluid gets cut off when she tips her head in certain positions. It’s something we as parents knew for quite some time that something wasn’t right, but now we actually have medical pictures for doctors to believe us.
We are going to make our pilgrimage to Baltimore soon for Scout’s check-up with Dr. Dietz, have an echo, and a full body scan to check for aneurysms. Within the manifestations of Loeys-Dietz Syndrome, one of the biggest dangers is aneurysms anywhere in the body. Something that is not.cool.dude. Not one bit. Scout has already had her aortic root replaced because of that. It’s a connective tissue disorder and that connective tissue is very, very, and might I add one more very, weak. The doctor that performed Scout’s strabismus surgery said that he had never seen anything like it.
Scout riding a horse at the Center for Courageous Kids
At this juncture, I would like to take a side bar and say that, that is why raising awareness for this genetic mutation is so very important for the people that are effected by it and for the doctors and care givers that will come in contact with them. Gabe and I have been in rooms with doctors who walk in, ask us few clinical questions, we throw the term “Loeys-Dietz Syndrome” out into the air, and they leave the room to google it. No Kidding.
Ok, back to the main point of this post. We as always are asking for your prayers. We are asking for awesome results in Scout’s check-up, echo, and scans. We are asking for Scout’s peace and bravery through the process. We are constantly asking for Scout’s complete healing, and for us as parents to be guided into the right paths to take medically, spiritually, and all other aspects it takes to raise a child with some extra special needs as well as her “uneffected” sibling.
Also, on another very personal note. We ask that you pray for our friend. A woman that has prayed along with you for our Scouty. Scout, Gabe, Ash and I love her and her family so, so much. She is one of the bestest people in the whole wide world. This family has done so very much for ours. Please pray for our friend Joey. She needs miracles, she needs peace that passes all understanding, and so does her husband and girls.
Thank you all for being so faithful for Scout and for us. We love you. We mean it.
Another side note: