Leo Clement

....with no sign of a safe harbor. This past weekend we were reminded about the fragile state of our ship. By ship I mean of course, the things that we have come to depend on in these turbulent five months. The things that keep us afloat and out of the deep cold waters. These little things are Leo's health, his big appetite, his smiles and giggles. Our daily routines with him; the bedtime baths, the therapies, the inevitable doctor visits, lazying on the couch, the little spark of pride and happiness we feel when his nurses comment yet again about his wonderful thriving presence. I felt like all this was threatened by our first experience with seizures. Seizures are the new hazard that has come up on our horizon. I guess naively, I hoped and assumed that somehow our little man would be spared. That he has suffered enough, that his parents have for sure, enough to last us the rest of our lives, thank you very much. In fact, one doesn't need much of a brain to have a seizure. Mos

Catchy title eh? No no, don't worry, nothing controversial or threatening here, just wanted to share some thoughts. Before Leo, I, like many other Orthodox Christians, had a pretty basic view of abortion. Although I didn't go to the annual pro-life rally on the D.C. Mall, I had some vague opinions about abortion being wrong and just knowing that I personally would never do it. I think that sums up most of us reading this blog. However, since the little Leo man has come into my life, I find that my views have changed. I've realized that bearing a child is something bigger and more mysterious than a pro-life banner can really sum up. Now, for the first time, there is a part of me that can almost understand that deep dark place that a woman has to be in to willingly abort her child. It's a terribly lonely place, and the only other thing down there, is fear. Pretending that fear isn't there is kinda ludicrous; a proverbial elephant in the room. Fear is the only thing th

On Reconstructive... It's been a good Leo day!  We took him to see the neurosurgeon today and he continues to impress his lovely personality on the doctors and nurses who this time were poking their heads to see the little man.  The purpose was to discuss how to "fix" the shape of Leo's head.  The suture lines of his scull are very prominent because of how stretched his plates were at the time of his birth.  There is a surgery to fix his head.  This doctor has the power to create, literally to sculpt, babies heads!  How many of us can say this is part of our portfolio?  This is very intense surgery and today we learned more about what is happening in that field.  Amazing stuff.  We will not be doing anything "reconstructive" on Leo until he is at least a year old.  If he continues to thrive as he is doing now...gaining weight, body tone, and cognitive abilities, it may be a viable option for us at the time.  For us "reconstructive" means trying to

When Leo was two days old he got a quick-scan MRI of his head.  We did not see the results of the MRI until a few days before his release from the hospital.  On the day before he came home with us a team of doctors and nurses talked with us about his continuing care and we also viewed these images for the first time.  We hadn't seen what was inside Leo's head until that moment when these images appeared on the screen.    Indeed the images confirm Leo's diagnosis of hydranencephaly as far as we can tell.  In what is called the "supratentorial" region of the brain, or the cerebral cortex region, very little brain tissue is visible, hence the ruling diagnosis of hydranencephaly.  However, closer analysis from the top cut reveals that he has quite a lot of frontal lobe which appears squished but present nonetheless.      We managed to get a copy of Leo's MRI images the other day (four months later).  Now that we have more time to analyze these images new question

I realize that I haven't posted anything about Leo recently. Justin and I tend to ramble on about the thoughts floating around in our heads and neglect to talk about the real subject of this blog. Our little Leo Clement. Of course he's not so little these days! Weighing in at almost 14 lb, he's growing out of most of his clothes! These past couple weeks we've been busy with appointments and therapies. The recent news on the medical side is that the geneticists have requested a 10 month brain scan done, the results of which will be sent to this internationally known brain malformation specialist on the west coast. The idea is that he will be able to, just by looking at Leo's scans, tell whether his condition was caused by genetics or by a fluke vascular event. Maybe he would be able to tell more precisely what happened and when it happened. Sure a lot of this is purely academic at this point, but it would be nice to know! Even though everyone has told me it wasn'