5yncc

Update on Clara: With every passing day she's able to eat a little bit more, and gain a little more strenth to open her eyes and try to cry. Yesterday we finally got some answers. Our first round of genetic tests came back. Clara has something called Hereditary Hemorrhagic Telangiectasia (HHT): a genetic disorder which manifests itsself as abnormalities in the blood vessels. In HHT, arterial vessels flow directly in to the veins, and the additional pressure can cause bleeding. This genetic disorder accounts for almost all of the symptoms she has been experiencing, (as well as the visual skin irregularities you see on her face and head) and the brain abnormalities. This is inherited from a parent with the disorder - so myself or my wife likely also has the condition and we never knew. It was probably mild, and we never experienced major issues with it. When the additonal genetic tests come back in ~2 weeks we should know more. Our next steps are to search for AVM's (abnormal connections between arteries and veins) within her body such as the lungs, brain, and GI tract - and if any are found get her in for remediation immediately. At least we have some answers now and have a way to move forward. Keep the prayers coming, they've been helping!

One day at a time. That's how our family is living life right now. 👀Today, Clara Jane opened both of her eyes and looked around the room shortly after her breathing tube was removed. She has blue eyes like dad! We haven’t heard her voice yet, as she still has a feeding tube—but we’re hopeful it can be removed later this week. Please keep the prayers coming. We truly believe that without the prayers, good energy, constant love—rubbing her legs, arms, and body, singing, talking to her—she wouldn’t have come this far. If we continue, we just might witness a miracle. Even the doctors keep reminding us that the human body is a remarkable thing... often defying expert's expectations. They’ve told us the most significant factor in overcoming serious health challenges is the love and support of those around you. We’ve also begun conversations with neurosurgery, as there’s a strong possibility Clara will require some form of brain surgery soon. We're still far from leaving the NICU and bringing her home. But since none of this is within our control, simply seeing positive progress every now and then gives us a lot of hope. It's in God's hands, and we're OK with that. Regardless of what development disorders Clara has or doesnt have, she will have a very loving and caring home, with a loving older sister to help her navigate life and all of it's challenges.

my new dog is so cute