Leo Clement

So Leo... As always... is redefining, changing expectations, and making his parents re-examine priorities and learn new stuff. In other words? He's doing his little lion man thing. In between reading books about the brain, (check out the title: The Brain That Changes Itself) finding info on the bottomless web, and calling his docs every other day, we are definitely learning new things. The brain? Yeah, it's just pretty freaking awesome. I won't get into all that now, except to say that the brain is the most mysterious organ in our bodies, and that the more they find out about it, the more they realize they don't know. That also sums up Leo's brain pretty nicely. Every time they do an MRI, they see more brain tissue. It seems like his brain is continuing to decompress since the surgery, and things look really great in there. There is no way, however, for them to predict what his development will look like, but chances are that he will as usual surprise everyon...

Boil the sea. You can't take the sky from me. --Firefly Theme song. During the heat wave this past week, I was, yet again, (and again), reminded of the frailty, the uncertainty of our existence. The fact that the things we rely on, the things we base our whole being upon is just as unpredictable and frail as anything else. Like walking on a bridge and feeling totally safe while the supports that you can't see are weak under you. Is life just about chance, or luck? Some may make it across and others will fall, and yet, knowing this, we are still expected to stride out in confidence. How can we cope with this? When we are young, like trusting flowers raising our faces to the sun, we have not yet experienced the rain and hail that teaches us to be more cautious.  Once we have been battered down to the ground, it is harder to look up with the same kind of spirit. When children grow up, is it just a process of hardening, or becoming untrustful and cynical? The loss of innoce...

On a day like today, our two weeks in the hospital feels like just a bad dream. Did we really just watch our sweet boy brought to the brink of death and back? Was it just days ago that we held his unresponsive swollen hands and watched every heart beat on a monitor? If I didn't see his scarred and swollen scalp I wouldn't have believed it. He certainly acts as if nothing as happened. Except for being a little sluggish and cranky when we first brought him home, he now has come back to himself with gusto. I was worried that he would loose his goofy personality and trusting nature because of all the invasive procedures done to him, but that doesn't seem to be the case. If anything, he is even more goofy and loving then before! And just as I was putting him to bed tonight, I was getting his diaper from the other room and I swear that I heard him say "ma ma." No joke, the little dude totally said it. No one else was around, and though perhaps it might have been my imag...

In olden times, the life codes were much simpler then they are now. Though some things never change, there was however a stronger sense of what is right and a code one could fall back on in certain situations. Children grew up instilled with a little rule book in their hearts that helped them discern the proper action befitting the circumstance. Some of those rules have trickled down through the generations into our modern day, but most have been thrown out with all the other things deemed "old fashioned," and "unenlightened." Our modern society lives unhampered by those bothersome things like morality, chivalry, and respect. Some of those things are so archaic, I wouldn't even know how to define them to my kids. Maybe because most of those things are based out of a society where everything is centered on person to person interactions. In RL (real life) so to speak. Most of our present-day interactions are held through some kind of screen image or in even more a...

Leo is finally home! They let us go this morning, after a nice long visit where his awesome team just cooed and giggled over him, with Leo, of course, flirting right back. He was, however, completely ecstatic to get in his car seat, drive home, and take a nap in his own comfy bed. He couldn't stop chortling and looking at everything with this grateful look in his eyes, kind of like a shipwrecked survivor looks at the ground beneath his feet. It's heartbreaking and wonderful to see at the same time. We had to do it, didn't we? There I go again, just like any other parent out there, suffering from self induced guilt. You should see the poor guy though, he looks like a baby pin cushion, with scars, incisions, bruises, and holes everywhere. Plus his head is pretty huge and mushy with swelling along his ear to ear zig-zag incision, but they are positive that it will go away. Eventually. To quote, "in a matter of weeks, or months." In other words, they don't really ...

a whole lot of Leo luck brings us to post op day nine! I can't believe it's been nine days of this marathon. We feel like those cross country runners do as they near the finish line. At this point quitting is not an option, but crawling sure seems like a good idea. We are staggering, swaying, and limping towards the finish line. Leo's shunt surgery yesterday was a success, though his neurosurgeon had to put in a whole new tubing system since the old tubing managed to worm all the way down into his abdominal cavity. It actaully ended up being a good thing because he was starting to outgrow the old tubing anyway. So this has saved him a extra surgery in the near future since the new tubing should last him for another 6 to 7 years. Whew! The surgery itself went fine, although Leo came back pretty upset and stayed that way until this afternoon when they pulled his central line out. It was causing him a huge amount of discomfort so that once it was out, he was a totally differe...

Here are some recent pics I managed to get on to the computer. All is set for Leo's surgery tomorrow morning, and thank goodness he had a decent day today. Actually he spent most of the day just eating! Love to you all and send a prayer (again!) Leo's way tomorrow.  Beefing out the chemicals with some natural remedies! Can't beat the essential oils for comfort and healing.

A thousand apologies that I didn't get to the blog last night, since I pretty much collapsed into a deep sleep the moment my feet touched the threshold of our house. This hospital stuff is exhausting! Anyway so I found a computer here at the hospital but the blasted thing doesn't even have automated spell check; this is truly a dinosaur. I won't keep you in suspense any longer, Leo had a decent day yesterday with them upping some of the doses of the narcotics to figure out how much his body is craving. Now they have "caught" him so to speak and this afternoon they will start the wean. And of course, our guy, if things look too slow will take matters into his own hands. Last night he managed to yank out his NG tube and then proceeded to down several bottles of milk. So finally his face is free of all the tubes and he is much, much happier with himself. He also had a MRI yesterday morning, and even though he screamed bloody murder the whole time, the scans look gre...

And today we learn about withdrawal. Somehow the picture that comes to mind when I hear this word is a nappy drug addict looking for a fix, not a crying, trembling, sweating baby. Especially not my baby! Since they took Leo off the sedation and the other narcotics after his extubation yesterday afternoon, Leo has become more and more irritable, and today he was quite miserable until we figured out what was going on. The docs were hesitant to go straight for a wean from the meds since Leo was only on them for 5 days or so. Even though he is tough, he's proving himself to be sensitive to meds. Now he is on a very slight wean, just to help him get over the hump. After a long day of tears he finally settled down after a dose and was peacefully sleeping when we left the PICU tonight. Whew, there is always something! The human body is such a delicate instrument, most of medicine is just fiddling around to find the perfect equilibrium.  Anyway we are hoping that this will be the worst of ...

Ahhh air! Yesterday they took Leo off the vent. He transitioned perfectly, and after giving a couple coughs and hacks gave everyone a cheeky grin as if to say,"finally, thank you!" It is so wonderful to see him starting to loose some of the tubes and plugs. They also stopped his sedation, so by yesterday evening he was playing with his hands, grabbing at his mobile and even nursing on a bottle. Although unfortunately the bottle came back up later, but it was a start in the right direction. Poor bud hasn't eaten in a long time.  His swelling is going down at a pretty rapid rate, you can almost watch it melt away as he pees.  Yesterday in the AM his eyes were still swollen shut, and by the time they extubated him in the afternoon they were wide open. Most of the doctors left the hospital for this long weekend, but they all left for home with the expressed intent to re-shunt Leo on Tuesday. After that they expect to hold him overnight and then send us home the next day. It s...