See Christian and Lola's ISR video!

Tuesday, July 26, 2011


Today was one of those days.

You know the kind.

Everything needs to get done and nothing is actually accomplished.

I'm very familiar with these days.

It started beautifully when I woke up. I walked outside to find my husband sitting on the patio with Lola snuggled in his lap watching the sun come up. Yes, he gets up that early...every morning. Trooper.

Anyway, Christian was all content in his chair and then the rush happened. It was the rush to get out the door. We had to go to Lola's ISR swim class. But Christian had to eat, he needed pants, Lola had to get her swim diaper and swim suit on. And this all had to be accomplished in about 15 minutes because I have no concept of how long it takes to do anything. In fact, I often mistake something that a normal person knows takes half an hour and I think it will only take a mere two minutes. Therein lies the problem.

And not only am I rushing and short on time, but it is a simple fact of the universe that if I am rushing and short on time, poo hits the fan. No, seriously, poo hits the fan.

Christian has an explosion in his diaper, he throws up, he's mad that he's thrown up and throwing a Christian fit, and, p.s., we have to be at swim lessons in about 1 minute.

So we were late to ISR but still made it, stumbling into the back yard with a, "Are we late?" Of course we were late, that was a stupid question. And all the other moms, I'm sure wondering - Geez, can she get it together? Whatever.

We finally make it home to a very agitated and crying Christian. Something is bothering him lately and for the life of me, I don't know what it is. Frankly, it becomes exhausting trying to figure it out and I was in no mood today to do so.

There was a food explosion involved, more spills on the couch to add to the beautiful tapestry of stains on what used to be a pretty awesome piece of furniture, a cancelled appointment, and children who needed to be bathed...desperately.

Hard day? It certainly was one of those days. You know the kind. The kind of day where instead of jumping on the treadmill, you'd rather eat a plate of nachos. I know that day. That day was my day.

But then I hit SUBMIT. Why, yes, I will book that trip to Seattle in October. And there was a silver lining. I can't remember the last time I was so excited to hit SUBMIT.

See, there is this really cool retreat in October for moms of children who have nearly drowned. I know these parents through blogs and message boards and last year they held their first retreat. I missed that one because Lola was still small and I imagined that it was out of reach. I'm also not great at getting emotional in front of people and Christian is a subject that turns me to goo behind closed doors. But when I saw how much fun they had and heard about how healing it was for them, I was so sorry I missed it.

This year will be different. I'm going! I'm so excited and a little nauseous at the thought of leaving my family to go somewhere by myself for a few days!

These parents are like me. We share a journey that is like no other and we have children that share similar stories, pasts, and futures. And so what if I turn to goo.

Out of the mess of this day came good things. Now all I remember from today is my husband with Lola on his lap this morning, and hitting the SUBMIT button.

Can't wait for October!
Saturday, July 23, 2011

Leap of Faith

Right around the two year anniversary mark and just shy of Christian's first birthday, things have slowed down just a little bit to allow some reflection over the last year.

The first year was just so busy that comparing the two sometimes makes me feel like we didn't do anything. And typing that out is an ironic metaphor for Christian. Often it seems like he isn't doing anything and to the untrained eye, it seems like just that - nothing. But just like Christian, if you look below the surface, take some time, and wait for it..."it's" there. However subtle, this second year brought "it."

So what did we do?

There are many small footnotes I could pour over and explain but I'm going to stick with the big guns.

1. We attempted the Ketogenic Diet.

We attempted it. I said I wanted to do it for Christian and we did. We tweaked, we fiddled, we calculated, and we recalculated. It was quite an undertaking and everything seemed to stop in lieu of this "crazy" high fat diet we were going to try.

After six months we decided it wasn't for Christian. But I would, by no means, consider this unsuccessful. In fact, the keto diet is what gave us the confidence to wean off seizure medication. If not for the keto diet, I might not have ever had the guts to do it.

Which leads me to my next big thing...

2. No more seizure meds.

A complete wean. Is he seizure free? Nope. Was he seizure free on the seizure medication? Nope.

First, let me put out a disclaimer that this is a choice we made as a family for Christian, who is unlike any other little boy, brain damage or not, and we made this decision specifically for him. I do not promote getting all renegade, not listening to your doctor (although I might prove the contrary), and going cold turkey off medication. This can be very, very dangerous.

So speaking as Christian's mom and on behalf of Christian, this is the decision that was right for him. After watching every medication fail, after watching my son on doses of medication that could knock out a grown man, after still seeing seizures and, in some cases, more and newly developed seizures while on heavy duty seizure meds, we decided enough is enough. With brain injury time is your best friend and your enemy. We would not accept that even more seizure medication might make things a teensy bit better, but it probably won't, but, hey, just for kicks add this medication and see what happens.

I know the statistics, I've done the research. If a first and second seizure medication are not successful, the chances of a third, forth, and even fifth medication working diminish to below 5%. We are just not going to experiment with this anymore. Now if a new fangled seizure medication rolled into the market and promised to be the saving grace of epilepsy, would we try it? Of course we would consider it! Until then, we are not doing this anymore.

And you know we now see less seizure activity. Some of the seizure activity that came right after waking up have gone away. Just poof! He's done with those!

Again, this is not for everyone. But it is the right decision for Christian. It was a big, HUGE, GARGANTUAN leap of faith. There is this fear that what if things are okay but we think they're crappy and we take away this med and things get even worse? What then? Leap of faith, baby.

3. Holy head control!

All of the sudden, Christian could hold up his head.

Now granted, he's always shown progress with head control, but it's been a lot of extension. Somewhere between our trip to Euro-Peds and the onset of the keto diet he just started holding up his head. For long periods of time. Like, minutes. And he hasn't stopped.

So what do we have lined up in the future? Well, you know we just can't sit on our laurels letting life pass us by, right? We have the VNS surgery and our first day of school and that's just coming the next month!

It's all just one big leap of faith, I think. Some days I'm running lower in my faith supply than others. But it's there keeping us going just waiting for us to jump.

We're taking just a short break before the August rush to sit on our respective laurels before it's time to jump again.

Sitting on laurels.

 I know this picture looks nicey-nicey but it's really more of a punishment. It was the only position that would break up Christian's arching and extension! So there he punishment.

Year three has commenced. Ready to jump?
Sunday, July 17, 2011

Rocking It and Botoxing It

Christian's toes are looking awfully young these days.

Nothing like a shot of botulism toxin to liven those toes up, right?

I kid. I kid.

Christian was admitted to the hospital last Friday to get Botox. Admitted to the hospital? - You ask. Isn't that an outpatient procedure?

Normally. But this is Christian we're talking about and he likes to stand out. No conforming for him!

Seriously, though, Christian's toe flexors are out of control. We've always had issues with Christian's extension. He has times when it's under control, but anytime he's upset, sick, going through a growth spurt, the sky is cloudy, you looked at him sideways, he reverts to extension.

What does extension look like? For Christian it looks like he is straightening his legs and arching his back. Kind of what little kids do when they throw a fit. I know this because Lola is into throwing fits these days and her favorite move is throwing her head back while screaming in defiance. Come to think of it...maybe Christian's just throwing a fit. Hmmmm....

Anyway, we have never really been able to unlock the tone and extension in his legs. The quadriceps have a lot of tone but we were thinking the culprit might be those pesky toe flexors. He points and he points with fire and furry. So we thought we might get to the bottom of things by botoxing the heck out of his toe flexor muscles - the muscle that controls the toe point. And, yes, I just made "botoxing" a verb.

Side note: I'm well aware that it's not the toe that's the problem. It's his brain telling him to do that. But we're trying to treat his body to avoid structural problems since his brain has a mind of it's own (pun intended). I even told the neurologist that I knew the pointed toes came from his brain. So if he had something to inject into his brain, give me a call because I'll be the first to sign up! Kidding, again. (Kind of) But I digress...

We had to admit Christian because the neurologist suggested general sedation due to the amount of pain involved with the toe flexors. It involves a needle going into the calve and hooking up an electrical stimulator that sends a pulse to each toe. When the toe - the big one - starts to wiggle to stimulation, the neurologist injects the Botox into that muscle, temporarily paralyzing it.

Christian does NOT like pain. Who does, really? But he REALLY doesn't like it. He's actually hypersensitive to it. So pain is amplified. A while back I would have been leery of sedation medication like versed and fentynal. But I'm over it and I'm not playing around anymore. He needs to be comfortable. And he was comfortable during the procedure. Mission accomplished.

Speaking of during the procedure. The neurologist was really nervous about Christian's breathing. I suppose I can appreciate this. It is a side effect of sedation - slowed breathing, especially for shallow breathers. And I suppose that if he knew Christian and what a rock star he was, he would know that Christian would do just fine.

In fact, when the procedure was over, the neurologist (who's been working with us for two years, by the way) was surprised and elated that Christian did so well, especially with his breathing.

That's nice. But why are you so surprised, neurologist? Do you not expect anything from my son? Do you not know what an amazing little boy he is? If you knew him, you'd know he never has problems with breathing unless he's sick. But outside of a respiratory infection, he sats at 100%. You'd know this if you truly knew my boy. You would have known he would rock this. And he breezed in and out of that procedure just like I knew he would.
-End Rant-

Sorry, I just felt some fight in me bubble up when I saw how surprised the doctor was by how well Christian did. Momma's fight for their babies. A little lesson I was reminded of by Brody's mom, Jackie. She could use some prayers right about now and if ever I found a mother that has done everything possible, travelled to the ends of the earth for their child, it was Brody's mom. Please think about this family and send up some prayers and good thoughts, whatever the outcome.

So Christian got Botox. And he rocked it. Because he's an amazing little boy and everyone who knows him knows it.
Thursday, July 14, 2011

Celebrating Super Christian

Celebrating Super Christian

Two years.

It's seems like more than that and it seems like less than that in the same breath.

This Christian that we know and love is our Christian. And, man, do we love that kid.

The two year anniversary of his drowning wasn't sad. We were visiting family in upstate New York for the week so there was a lot going on to distract us. But, honestly, it feels like another life. When I tell the story, because it seems that lately more people are asking, I feel like I'm telling someone else's story. And the truth is that Christian has been this Christian - our Christian - for longer than prior to the accident. Two years longer, in fact. So telling our story, what happened to Christian, is becoming less and less a part of our life as it is today. Of course, the repercutions are with us forever. But we think about the actual event less and less.

In comparison, the second year has been about fine tuning. The first year we were throwing what we could to the wall to see what would stick. The second year was more about coming up for air, throwing one thing at the wall at a time. And sometimes slowly and painfully watching it fall to the ground.

The second year has been a lesson in patience. Not the kind where you say, "I just have to have patience." And the word and action of patience sits there like it's the period to the end of a sentence. End of discussion. The kind of patience I'm talking about is a hard one. It's one I don't willingly choose. It's forced upon us because there is no other choice but to have it. And instead of a period at the end of the sentence, it represents an exclamation point, a, a curse word (or two), and a to be continued.

I, personally, learned a lot about grief. I'm not sure I knew it well the first year as I was just struggling to adjust. But when the dust settled, grief was there waiting. And the funny (and evil) thing about grief is that you think you get through the worst of it, and it finds its way back to you in different forms and with different triggers. Maybe not as strong as it once was, but always there lingering.

And we've all learned more about Christian. We've learned what works. We've learned what doesn't. We've learned that we'd rather have a child who has a few spasms and jerks but who is alert and active than a zombie child who still has jerks and spasms. We've learned there are battles we'd like to fight and battles we're too tired to attend to. And we were blessed with a crooked little smile.

This second year has been harder, in a sense. But we're more solidified as a family. The future is still bright and we always have something new on the horizon. A lot of hope on that horizon, too.

We look at these anniversaries as a celebration of Christian's life. Where gratefulness, thankfulness, hope, grace, and family meet. I often feel a need to make a resolution. My resolution is to celebrate more and whine less.

Speaking of celebrations, those August Moms are never far from us. One of our August mommy friends helped us celebrate this second anniversary of the day Christian was given to us for the second time. Talk about a full circle moment! An August mommy and and an August baby celebrating with us in New York? Did that really happen? Yes it happened.

And celebrate we did...

Can you hear my nephew, James, screaming "Cake! Cake! Cake!" in the background?

It was the best cake. And I know because I ate a lot of it. And so did Christian, by the way. We blended it up with a little milk and put it through his tube. The portion of his little cake shake left over that I didn't give Christian, I gave to my nephews, who promptly slurped it down with a Twizzler straw. What?! They loved it!

We love you always, Christian.
Monday, July 4, 2011

6.30.11 (It happened.)

dum spiro spero

I'm not sure really where to begin this post. A lot of what I've typed has been deleted and typed over because I can't quite explain what Christian's attempts at smiling mean to me and this family on so many different levels. Even as I type and read over, my words just don't do it justice.

In the special needs mommy circle, I heard maybe it would be four months...six months...nine months before I saw a smile from Christian. Four months came...then six months...then nine months...and nothing. The build up was worse than the actual dates. And then the year anniversary was upon us and still? No smile? Not even a twitch?

After every therapy, with every holiday, even every birthday, the one and only outcome I wanted most in this world was a smile. It's all I wanted. It's ALL I wanted. It's all I wanted.

I contorted my face, made every goofy noise, bounced, shook, swung, rocked, trying to coax any inkling of what might resemble a positive response from Christian.

After days (and nights) of his nonstop crying, I wondered - Why is it that he can cry so much but can't crack a simple smile? Isn't there a trade off of some sort?

And then I started thinking that maybe he just had nothing to smile about. Maybe he was just truly miserable and unhappy in this life.

A smile became the defining feature by which I judged every other hurt kid. Do they smile? Yes? Well, at least you have that, don't you. Snarky much? That's just pain talking. It wasn't about his first steps, sitting upright, eating by mouth. It was all about his smile.

I had daydreams of the moment he would smile and I imagined that it would be so emotional for me when that day came that I'd cry while daydreaming it. I would think - How lucky I will be to have THREE smiling children?

And then it didn't happen. Time passed and still no smile. I remember standing in my kitchen, feeling defeated, in tears, and saying to myself - You may just have to accept that you may never see your son smile again.

There it was. I had to accept it. And after enough time passed, I started to accept that maybe there wouldn't be any hope for a smile. Maybe he was smiling and I couldn't recognize it. Maybe the ship has sailed and if he's not smiling yet, medical statistics about brain injury might infer that there would probably be no smile.

It was such an emotionally gut-wrenching issue for me, I couldn't even bring myself to mention it to doctors or neurologists for fear they would, in deed, confirm that there would be no smiles in his future. That was until I met with his keto neurologist in Phoenix. I asked about the smile quickly so that maybe it was so quickly she wouldn't even acknowledge it and wouldn't have to say it out loud, my worst fear - "Silly lady, you know that if he's not smiling by now, he probably won't."

But she didn't say that. She just said, "He'll probably smile. It may not be like it was before, but it will probably start with him turning up one corner of his mouth and go from there."

Just as simple as that? And, You really think so? After a year and a half?? - Is what I thought.

I let the fight for a smile go for a while. In the past six months things have gotten to the point where we just wanted him healthy and content for God's sake. A smile? That wasn't the priority. (Although, we would have been elated if it made an appearance!)

I won't lie and say that some days it has been difficult to muster up that mixture of hope and faith that gets us through the day.

But then, seemingly out of nowhere, it happened. He started having what I thought and what probably were smiling seizures about a month ago - and, yes, there is such a thing as smile seizures. When I first saw one, I dipped his toe into the warm bath water, the corner of his mouth went up into a smile and he had a little jerk. I wasn't concerned. Half of me felt lucky, even if it was a seizure, it was all we had.

And then the other day, I noticed he was maybe...possibly trying to smile...on purpose! So I started tickling him under his left armpit right at the ribs where he's really sensitive. And the corner of his mouth seemed as if it might be thinking of heading north for a bit. So I thought we should do something bigger to encourage that mouth to get to smiling.

I grabbed him and bounced him and rolled...and happened. And you better believe I had to do it over and over again to make sure what I was seeing was really happening. The moment I had imagined for just shy of two years was actually happening. But I was in what my friend, Jenny, calls "smile denial." I couldn't believe. And it happened exactly as that neurologist in Phoenix said it would!

I didn't cry, though, as I thought I would. I didn't call everyone I knew. I was still in smile denial and afraid that what I'd seen wasn't real, or maybe it was a mistake. I was just in disbelief.

Now, I'm humbled. After almost two years, we got something. Hope was not lost. There was still possibility. It was not set in stone that he would never smile again.

I don't care if it didn't look like a big cheesy grin. This is a child that has shown absolutely no positive emotional expression in almost two years. TWO YEARS! None. Zip. Nada. So a turning up of the corner of his mouth in response to rolling on the floor is MONUMENTAL.

You know when I did cry? Today, when I tried it again, and I saw the corner of his mouth head north again. Now, he's been sick, but it was still there. It was real. I didn't imagine it. It wasn't a fluke.

The lesson here? That even after two years, there are still miracles in store. Even after days (and nights) where it's hard to find any hope and you're weary and tired, something big might be right around the corner.

If he never does it again, I had that day. I had that moment. It's what I hoped for and what I prayed for and it was waiting right around the corner for us.

dum spiro spero
While I breath, I hope.

It used to be a phrase I used to remind myself not to loose hope.

Now it's my motto.

And I'm so lucky to have THREE kids that smile.

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