Leo Clement

Yikes! The H word has been heard around here with increasing frequency! Should we be worried? This is hard, that is hard, everything is hard hard hard! I think we are just resigning ourselves to favoring that adjective, and since it has moved in on squatter's rights, we are putting a new spin on it. Hard is the new good! It is the new black, and we are making it cool. Here is a brief video of Leo working that H word! And also fitting in with the theme, Leo's surgery is bumped up to February 6th . We are keeping our fingers and toes, and prayers crossed that this teething/slight congestion/whatever the heck it is will resolve by that time. I am so ready to get this over and done with. This is one of those instances where the anticipation is waaayy worse then the thing itself.  Will it be hard? Yeah. Will it be cool and exciting and worth it? YEAH! Rock on little lion man!

What does it mean to live? When a baby is born, that question seems impossibly simple. Just looking into your newborn's eyes, and you know the answer. Joy, life, confidence, wonder, all that promised, and more. Your baby blinks sleepily up at you, and the love rushes out of your heart. The sun shines down and bathes you in its joyful rays. You know what life means. But then, as life winds on, you are not so sure of the answer. Things seem to come down off of the high, and everyday may be a little grayer; a little scarier then the last. And then one day, something so terrible, something so dreaded will happen, and it forces you to change your answer. What does it mean to struggle? When life is hard, filled with inexplicable and helpless pain, when everything goes wrong, and then death may cross your doorstep. You might be tempted to say that it doesn't mean anything. Anything other then grief. Babies born, just to die, days, months or years later. That is all it...

Just to let all of Leo's faithful followers know... We canceled his surgery that was supposed to happen tomorrow. He is still getting over this past cold and seizure induced hospital stay, as are we, so we decided to play it safe and postpone the surgery until a better day. Once I read about the flare from the sun causing technological difficulties, I felt even better in my decision. I want technology to be in tip-top shape when my son's life will rely on it!  It was just too much for us right now. Also he has a profusion of other appointments this week that would have to be reshuffled, and honestly, I'm not up to that kind of thing right now. Tomorrow, bright and early, he has an appointment with the neuro-development clinic that I have already postponed several times. I'm glad that this time I will actually get to take Leo there and see what it is all about it. We took him there a long time ago, when he was 4 months old or something, and still branded...

Yesterday I woke up to find Leo in the relentless grips of the seizure monster. The night before he was acting under the weather, runny nose, mild fever, and cranky attitude. But it didn't start there. This whole past week has been one problem escalating into another one, until yesterday it all came crushing down. I saw it coming, so when the staggering mass hit my shoulders yesterday, I didn't feel surprised. It was just inevitable. Five in the morning, I woke up because in my sleep I think I heard Leo's breathing change, and when I ran to his crib and felt his jerking limbs, I knew right away what was happening. We had the emergency seizure med kit, and feeling slightly more in control, Justin and I gave it to him, only to see that last vestige of control slip away when the darn thing didn't work. DHMC Emergency said to call the ambulance, and then everything went, if possible, from the scary and serious into the slightly farcical, as the ambulance couldn't make ...

Everything! If that is, you are talking about getting medical stuff done. If however, you are my five year old, then pestering will get you an early bedtime without supper. Isn't it unfair how grownups can do things kids aren't allowed? What is the rhyme and reason there anyway?  Well my pestering DHMC has payed off today, after I was transferred to someone who is basically an "expediter," and "all around ruffled feathers soother," who quickly managed to slip through the sticky medical web and managed to pull up some information, finally. (But can you believe that until I started with the phone calls and messages, they didn't actually even have anything on his file about the surgery?) The DHMC patient data system is unfathomable and mysterious. Not for mere mortals! So as of today, the date for Leo's second big cut is February 1st. *Gulp. And the belated results of the EEG are normal, at least normal for little man, so no need to up his Keppr...

Just got back from the meeting with the plastic surgeon and neurosurgeon, and even though Leo felt like he should bury his head in my sweater, Justin and I felt like we could finally unbury ours. Between the exclamations of wonder regarding Leo's fantastical progress and new skull shape, we learned some more information about this new surgery that helped alleviate some anxiety. The best news was that is seems that they won't have to fiddle with his shunt after all. That cuts the intensity and variables of the procedure in half. They won't have to remove his tubing, or externalize it like this past summer. What a relief! The plan is to open his old incision, but leave some tissue covering his shunt, which is located right behind his frontal skull bone on his right. Then they will disconnect and remove the two skull bones of the forehead and the bone that makes the brow ridge and reshape them by cutting little pleats and bending the bone to make the new ...

The New Year is blowing through the cracks in our cabin, and the wind smells of change. Of change and opportunity and purpose. We can almost taste it.  The wind blew so strongly, quite spinning us all around, so that the direction that we found ourselves facing, was a completely fresh one.  And the new view, is pretty exciting!   Although not all the changes are thrilling, when we think of Leo's upcoming cranial surgery, we feel overwhelmed and scared. The thought of our poor fellow's noggin going under the knife once again is daunting. But the winds of change have caught us up, and we can only speed along with it.  Knowing..... Trusting..... Believing.... (with our trusty sidekicks and dear friends in tow)  That though the wind may uproot us, and shake us about, that it will also deposit us gently, right in that place where we need to be.  ...