My wife and I would like this blog to be a place where people can get updates about Leo on their own if they so desire. Some of our thoughts will flow from here so we want to keep it in one place. We are assuming if you go here that it will be a prayerful visit not one of fear or anxiety. That is our hope and also we don't want to spam people with tragic updates on Facebook :), as there is no warning for that yet on Facebook.
Leo was born on Monday morning into a haze of uncertainty about how he would do in the world given his condition. You can get some insight into his condition but I don't recommend believing everything you may see or read online about hydranencephaly (pronounced: -hi-dran-en-seff-a-lee). Fact is Leo's face is fully formed and except for his enlarged head, which is not itself misshapen, he looks and behaves like a normal infant. Strange and wonderful at the same time he has the appearance of a wise sage advanced beyond his years. We are not sure what he feels or his pain threshold. Most of the upper parts of his cerebral cortex are missing and replaced with fluid, but there is residual brain matter in the lower parts though how "normal" it is is undetermined. Unlike normal babies who store sense impressions from the world using higher parts of the brain such as memory we are not sure if he will act from memory at all as he grows. This informs the bonding process for infants, but they can also bond at different levels without memory, so we think. Somehow babies just know their parents. Leo knows us but in a very primitive sensory way (can't explain!). As far as we know he may not be keeping that sensory data for future record. Then again all infants are mysterious so what Leo lacks he may overcompensate in other areas. But it's clear that most of the normal brain tissue that is needed for growth is absent and so his prognosis is grim.
We want to open this blog up to anyone who is interested. It exists to inform people who are concerned about Leo's condition. Hopefully it will serve many functions: a myth buster, a contemplative forum, or perhaps a resource for all of you who are eagerly waiting and praying in the wings. More later.
Justin
Leo was born on Monday morning into a haze of uncertainty about how he would do in the world given his condition. You can get some insight into his condition but I don't recommend believing everything you may see or read online about hydranencephaly (pronounced: -hi-dran-en-seff-a-lee). Fact is Leo's face is fully formed and except for his enlarged head, which is not itself misshapen, he looks and behaves like a normal infant. Strange and wonderful at the same time he has the appearance of a wise sage advanced beyond his years. We are not sure what he feels or his pain threshold. Most of the upper parts of his cerebral cortex are missing and replaced with fluid, but there is residual brain matter in the lower parts though how "normal" it is is undetermined. Unlike normal babies who store sense impressions from the world using higher parts of the brain such as memory we are not sure if he will act from memory at all as he grows. This informs the bonding process for infants, but they can also bond at different levels without memory, so we think. Somehow babies just know their parents. Leo knows us but in a very primitive sensory way (can't explain!). As far as we know he may not be keeping that sensory data for future record. Then again all infants are mysterious so what Leo lacks he may overcompensate in other areas. But it's clear that most of the normal brain tissue that is needed for growth is absent and so his prognosis is grim.
We want to open this blog up to anyone who is interested. It exists to inform people who are concerned about Leo's condition. Hopefully it will serve many functions: a myth buster, a contemplative forum, or perhaps a resource for all of you who are eagerly waiting and praying in the wings. More later.
Justin
I love that you're both doing this and what you both wrote was absolutely beautiful, sensitive, loving and touching. My thoughts, prayers and love are with all three of you!--Kathy
ReplyDeleteThanks, guys—our love to you, Nika, and Leo.
ReplyDeleteJustin, your writing is beautiful, inspiring, and draws me closer to our Maker with tears in my eyes. I'm so glad you are doing this, because so many are praying and hoping and loving and walking alongside you and would like to know as often as possible what is happening and how you are all doing. Thank you for this gift. I love you my brother!
ReplyDeleteYou are in our prayers.
ReplyDelete-Fr Daniel
Leo is absolutely Beautiful!! He's a DuMoulin baby, afterall.
ReplyDeleteOh sweet Leo. He's beautiful! Praying for you often.
ReplyDeletethe coxes
Dear Anna and Justin, Nika and Leo,
ReplyDeleteOur hearts ache for you; our prayers envelop you. Praise to God for all things! May God continue to shower you with His love and joy -- joy because such a beautiful one as your son exists. Each moment is precious for all of us. Love breaks through to eternity. Thank you, Leo, for teaching us this!
Nil and Sheila
You all give me pause - to think, and to thank and to wonder...My prayers are with you and yours. And I will keep praying..
ReplyDeleteveneda gabourel
Be assured of my prayers from Australia.
ReplyDelete