What Five Years Later Means Today

It's quiet here.

Coffee is half full. (I'm an optimist.)

Lola is asking for more Lucky Charms. (I know, I know. But she's content. I'll make her all natural smoothies for the rest of the week to make up for it, okay?)

Christian is watching TV. (Yup. Just checked. He hasn't turned away so he's still watching and engaged I think.)

He yells.

Lola - "Mom, I hear Christian singing. I think he's singing along with the cartoons."

I hear him, too.

This is what five years after a drowning looks like. This is what five years after the worst and best day of my life looks like. This is what five years after thinking I may never be happy again looks like.

This is us. We've reached normal.

To be honest, we've been at a normal for a while. It's a fine place to be. We obsess over stupid, unimportant  irritants of everyday life. I fuss about stains on my carpet. We discuss whether the monsoons will hit not because it reminds us of that day but because we are genuinely concerned for our water hungry trees in the back yard. And because monsoons are pretty awesome. We binge watch our favorite Netflix shows and whine about work. I mean, I whine about work.

These are all of the things normal affords.

It was five years ago today that my son drowned. He was eleven months old. Not even walking. He was too nervous about taking the first step. So he'd stand and bounce until he sat down and crawled to his desired destination.

His desired destination that day, five years ago, was the pool. I closed my eyes for what seemed like just a minute. I let my guard down for what seemed like just a minute. And the next sound I heard was my older son saying Christian had gotten out...pulled out of the pool...laying lifeless...totally white. There was dead silence. It was like all the people in the whole wide world had disappeared and I had no idea what to do.

He had no pulse and no heartbeat. The hospital called us in to "be with him." Nurses ran out of the room crying. It was a nightmare. A fucking nightmare.

I went to my little boy that day and I put my hand on his little chubby leg. There was so much going on. People rushing. The whining of a flat pulse ox. They were about to call his death. I said Christian's name. And then there was a pulse. Then there was life.

He drowned. He didn't nearly drown, although that's what we call it so people will understand. But what really happened is that he drowned. He died. And then God sent him back. Or he came back on his own will to live. Or both. Either way, it was miraculous.

I'm honest here about what happened. Five years later in the corners of my heart and my brain there is still grief and guilt and I'm not sure that will ever go away. I always had fierce opinions about what it meant to be a parent. I was a breastfeeding advocating - attachment parenting supporting - daycare loathing opinion machine. I always believed I was born to be a mother ahead of anything else. I judged other parents harshly and swiftly. Nothing would ever happen to my children because I watched my children. I watched them and cared for them and loved them too much. Surely they'd be safe. Especially if I judged other parents. That would for sure make my kids safer.

Until it didn't. And something near fatal happened. And then I was the person who was judged. Rightfully so, my old self would say.

If I've learned anything in the last five years, it has been compassion. We hear of children drowning all of the time. And we scream, "Watch your kids!" because it makes us feel safer. Christian wasn't playing by a pool. He didn't accidentally slip under while I wasn't paying attention. He got out of a house that I believed a crawling baby couldn't jailbreak. I was so wrong.

As another near drown mom said perfectly, ask yourself - have your kids ever been alone in the house long enough to draw on the walls? Make a huge mess while you were tending to another child? Hide from you thinking it was a game you didn't know you were playing? What is your child doing while you're posting in comment sections about the irresponsibility of other parents? That's about how long it takes for catastrophe to happen.

We didn't get out of it unscathed. Christian is a different child, yet the same boy. Baby pictures of him will always be bittersweet. I will always look at them with sadness, as if that baby died. Because he kind of did. We had dreams for that baby. We walked on the beach while he was still in my belly and talked about how we would bring him there to play in the sand and soon he'd be walking with us with his little feet.

We just got back from taking the kids to that very beach over the weekend. I sat with Christian at the shoreline. He can't walk in the sand. But I helped him feel it. I thought about the plans we made for him on the beach and felt a little pain in my heart. But the pain was quickly squelched by gratitude. I would rather be sitting at the shoreline with him on my lap describing the waves and dipping his toes in the water than staring out at that giant ocean morning and missing him. That I know with 100% certainty.

My boy is here and alive. He is the cutest blond-headed almost six year old with big curls that grow out if I let his hair go long enough. Everyone who spends time with him loves him. He teaches the world, the doctors, the skeptics not to count him out. Thank God he's healthy. He's content. He makes happy sounds and annoyed sounds. After two years of nonstop crying in the beginning he rarely cries now. Only if he's truly upset or hurt does he cry now. He loves to be snuggled.

I love Christian to a depth that scares me. Maybe it's because I have the acute knowledge that he could be gone at any second. He is my perfect baby. I see him as perfect the way he is. That doesn't stop me from wondering what he would be like. I'm not really into babies anymore but I have a weakness for baby boys with big heads like him. And I observe six year old boys as if it's something I've never seen before, like they're in a zoo, trying to process and understand what Christian would be doing.

Over the past five years I've changed. I'm not as patient as I'd like to be. I think everyone must think I'm so patient and understanding. I'm probably less patient and understanding than you realize. I'm not afraid of questions about Christian. I'm happy to teach. But I'm not as helpful as I'd like to be with new parents who are going through the same thing we went through. In all honesty, we've moved so far beyond that and I just don't really want to go back.

We are thriving in beautiful normalcy. We didn't get here alone. We have so much support from family and friends that helped carry us here and they show up every day. Whether it's through being physically present, sending an email, a message on Facebook, or just praying for us. They all help us stand and move forward.

Christian's journey isn't over. Our story still continues. It's one of faith, redemption, compassion, forgiveness, grief, pain, beauty, and hope.

To my forever baby.



I feel so strongly about ISR lessons for babies as young as six months old. Barriers of protection and supervision are key but ISR saves lives. When all barriers fail, ISR gives babies the instinctual skill to save themselves. If you are so inclined, please consider donating to the ISR scholarship fund so that cost will not be a factor in children obtaining this skill. To donate click on the link below. Donate in Christian's name.

https://isrcrossfit.com/how-you-can-help/donate-to-isrcrossfit.html

Santana

I went to a funeral last week.

His name was Santana. He nearly drowned about seven years ago. After his near drowning he struggled a lot. Santana's was one of the first stories I followed.

Fresh out of our trauma, his story scared me.

Wait. You mean these kids don't fully recover? You mean they'll be profoundly disabled? Suffer seizures? Their bodies will transform and their faces will look different?

Not my son.

I thought.

Then my son was profoundly disabled. He had seizures and his bodies twisted and toned. His face looks different and somewhere along the way I realized there was so much about Santana that I saw in my son.

At first it terrified me. But after learning to love and accept my son as he was going to be it wasn't so hard. I went to meet Santana while he was sick in the hospital a few years ago. He had soft skin, warm from a fever. I wasn't terrified. I just felt connected in some strange way. Those big brown eyes - they were filled with life. It was a life of struggle but it was life, nonetheless.

His mom, Lindsey, and I have attended the retreats for near drown moms in Seattle. Over the years I watched Lindsey offer support to other moms and kids, no matter their ability, even though Santana had a rough go of it. Even though Santana suffered botched surgeries, long hospital stays, and crippling seizures, Lindsey still found it within herself to offer supporting comments to other mothers.

And when I met her in person she was so goofy and bubbly and fun! Although her life with Santana was full of pain and struggle, she managed to be all those things.

I waited over a week to write about Santana's funeral even though it's been brimming since. He passed away peacefully in his mom's arms after getting very sick and his body showed signs of shutting down. He was tired on this earth and it was time for him fly.

So I drove up to his funeral service. It was an unseasonably rainy and windy day. The service was held in a building of windows so we could see our beautiful desert. The windowed room was packed wall to wall, standing room only. Dress code was Superman shirts or the color purple for drowning impact awareness. There was a sea of Superman, Christian and I joined in our Superman shirts, as well. It was a sad day but there was hope in the air. Santana was free. I'm sure everyone in that standing room only building was visualizing Santana running free. It was surely not the end for him. It was just the beginning.

He passed away on the morning of Easter Sunday. The day of Resurrection. No better a day for such a Superman.

The service was beautiful. And after it let out everyone released purple balloons into the grey sky. There were so many! Santana had a motorcade escort to his final resting place. At the grave site I heard his grandmother whisper, "I love you so much," before she put a flower on his tiny coffin adorned with a hanging Superman cape. Through the wind and the traffic and the chattering kids, everything was silent in my ears except for his grandmother whispering.

You don't understand. You might think our life is hard, that these kids have such painful lives but they are filled with so much love. And if you think of all of the people out there who go through their entire lives feeling unloved and like nobody cares about them, isn't it amazing that these kids will never feel that?! They will only feel complete and unconditional love, no matter how short their lives might be.

I live in a world where kids die. I say this often, probably more as a coping mechanism so I can protect my own heart. And Santana isn't the only child like mine that has passed away over the last year. I think there might have been five more children and two that almost made the flight but decided they wanted a little more time here on earth. I'm well aware that Christian's life might be short. But, dammit, if he doesn't feel love and adoration every single day, every second of his life.

I was talking with a friend one day about this subject and she said, "Isn't it better to feel loved, even though your life is short, than to go through a long life never feeling loved at all?"

I believe with 100% certainty that Santana was loved every day of his life. And that funeral service, fit for a Superman, was filled with so much love and sadness and joy for his freedom.

I often wonder about parents who post really benign complaints on social media about their children having minor issues or fussing with really unimportant aspects of life. I wonder if they know what it's like to give your child's body back to the earth. To have to walk away. To be the mother of three, when on this earth there are only two children. Every family picture is missing a child. The observation about family pictures isn't meant to be shallow but to understand what it's like for a mother and a family suffering such profound loss.

I can also tell you that where Santana's journey ended, we were beginning ours. Pulling out of the church and into the motorcade I noticed right across the street was where Christian had his first HBOT session three weeks after his accident. The irony was not lost. And I don't know if irony is the right word. Coincidence, maybe? It was sobering. But all of our journeys start and end somewhere, don't they?

Santana's journey was filled with love. This I know for sure. There were hundreds of people in attendance, including some of my near drown moms! From Las Vegas, from Oklahoma, from Tucson, we came from all around and when the service ended we waited for Lindsey. These Mamas right here are the strongest I know.

And sweet Santana, you touched so many lives. You were one of the OGs! Now everytime I see someone with a Superman shirt I think of you. Everytime I brush a tiny mohawk into Christian's hair, I think of you.You paved the way for some of us and for those that might unfortunately come into this world. I know you are playing and laughing and watching over your family. They are blessed by you. We all are. 

"I would rather have thirty minutes of wonderful than a lifetime of nothing special."

-Shelby, Steel Magnolias

Sleep softly, Santana.

Blendy-Blends: Just do it!

Hello, everyone! What are you eating today?

I can tell you what Christian IS NOT eating.

Cans of formula.

And he's thriving! He's doing great!

I remember his former GI doctor trying to explain why formula was "perfect nutrition in a can."

My first response to that would be if it's so perfect why don't you feed it to your kids? In fact, if it's so awesome, why aren't you eating it for breakfast, lunch, and dinner?

I've never been able to understand why just because my son's brain is injured that means he doesn't need the same nutrients or the same foods as a typical four year old boy. He doesn't need a perfect food pyramid. He needs what I make him. And I aim to make him what I would make him if he could ask me for a snack himself.

Okay, I'm kind of rambling.

What I really want to do is update everyone about the fascinating world of the blended diet! Or what I affectionately refer to as blendy-blends.

It's actually not that exciting, really. But I get a lot of questions about Christian's blends and what I use and how I started so I thought I'd update.

For those thinking about a blended diet, just like anything in life, the hardest part is STARTING!

My Rules of Thumb:

1) Feed your g-tube fed child what you would feed them if they were a typical mouth eater. For example, I would feed Christian chocolate chip pancakes if that's what we have for breakfast. Which has been the case for the last three Sundays. So that gets tossed in the blender. I would feed him cheerios and almond milk. So that goes in the blender. Scrambled eggs? That goes in the blender. You get the idea.

2) If you are having trouble understanding calories, divide it out. If your kid is on 1000 calories a day, choose 10 things that are 100 calories each. Avocados are about 200-250 calories each. Well, that just means you now only have to choose 8 things. Keep it simple.

3) Don't be afraid! Would you be afraid to feed a typical child? What's the difference? Use your Momma or Daddy or Gramma or Grampa brain and just keep repeating to yourself - I'm feeding my child. What would he want to eat? Apple juice? Okay! Blueberries? Okay!

Those are my start out rules. Easy, peazy, right?

I know there is adjustment. I know it can be difficult finding the right foods, combinations, calories, volume, mode of feeding, pump, bolus, and everything else! I know! It's taken work for us, too. But it's totally and completely worth it.

And just for good measure, here's a typical menu for Christian:

1 cup of vanilla almond milk - 90
1 cup of 100% apple juice - 110
1 banana - 105
1 avocado - 200
1 Dannon Greek Yogurt - 120
1 Nutrigrain Bar - 120
1 cup sweetened cinnamon apple sauce - 200
1 cup of frozen blueberries - 90
2 scrambled eggs - 140
2 tablespoons of butter - 200
1/4 cup of MCT oil - 300

Total..........1675 calories.
This amount is for about a day and a half.

Before:

See? Seasonal fruit. Yes, that is a Cutie. And those are grapes and frozen blueberries.

After:

Before:

I didn't take an after because the meat and veggie blends don't look so appetizing. And besides, all that kale looks so pretty!

*Add seasonal fruit, cheerios, other cereals, orange juice, or whatever you had for breakfast!
*I add butter and MCT oil for added calories and low volume. Experiment with different oils if calories are an issue.
*For constipation add pumpkin, more water, dried fruit like raisins and apricots, prune and pear juice.

A meat and veggie blend would include tuna, chicken, pasta or rice, usually something we had for dinner, carrots, spinach or kale, apple juice, tomatoes, almond milk, butter, olive and MCT oil. Oh, and mac and cheese. Because he's four. And he would love that.

On expense:

In my opinion, there isn't a terribly significant increase in our grocery bill. Everything he eats can be found in our pantry or fridge and everything he eats, with the exception of kale, we eat, too. So we're not buying anything really "extra." And, again, it's money I would spend if he were to eat by mouth.

All of this may seem overwhelming but it's actually pretty awesome. I am making my son's food. He eats what we do. It seemed so confusing at first and now it makes perfect sense.

And best of all...no vomiting! I'm now 100% sure his vomiting is caused by allergies. He gets seasonal allergies and when more secretions and/or phlegm gets down into his throat it kicks off a gag reflex. But if I hadn't experimented with whole foods I don't think I would have ever figured it out! We'd just be on the acide reflux medication merry-go-round.

I can't say enough about the blended diet. It has been one of the biggest game changers for Christian and for those who want to transition to a blended diet and have questions, hit me up!

I'm happy to spread the blendy-blend love!

Less talking, more doing.

I have a new motto for this year. It wasn't really a resolution because stating a resolution out loud is actually counterproductive to this year's motto.

LESS TALKING, MORE DOING.

Which leads me to ISR.

ISR stands for Infant Swim Resource (http://www.infantswim.com/). Lola has been participating in this program since she first learned to float at six months old. It was a gift. Lola has since learned to save herself should she ever fall in the water, no matter what barrier fails, no matter who's supervision she is under - I'm confident she can save herself because of ISR.

Last year, while at one of her lessons, I mentioned out loud - you know, that whole talking thing - that I wanted to help get ISR lessons for just one little boy. Not one in particular, just any two year old little boy. Two year old little boys are the largest demographic for childhood drownings. And Christian is a little boy, so, naturally, that is where my heart is.

Fast forward to this year, the year of less talking, more doing. With the impending heat of summer, I was trying to think of a way I could raise money to send at least one little boy to ISR. I thought of another online auction, bake sales, Scentsy fundraisers, Tupperware parties, I didn't know I just knew I wanted to stop talking about doing something and actually DO SOMETHING!

I also didn't know how to go about finding this little boy. I didn't want to violate any policies that ISR might have so I wrote them an email telling them about Christian and what I wanted to do.

Long story short, ISR presented us the opportunity to work with them and Crossfit Kids to make a video that will be on the ISR website, the Crossfit Kids website, and of course my little blog and anywhere else we want to put it. The video will be the fundraiser. The fundraiser will create scholarships for children to attend ISR sessions without cost being an issue. The video will be a tribute to Christian's life before and after his near drowning and it will also show Lola and her ISR skills!

Sterling's Story is an example of how the video will be done. I'm warning you now, if you watch it, you WILL need tissues.

This week has been kind of an out of body experience for me. I'm still soaking in the ripple effect this might have. My little goal was just to help one little boy, and now we have the possibility of helping more children.

So why do I feel compelled to do this? Among many other reasons of which I will elaborate in future posts, so many people have helped us along the way and I had no idea how I was going to pay them back. I'm even bad at thank you notes! But this? This is a way to pay it forward.

It's all part of that less talking, more doing thing.

Peace.

We've been home for less than a week after our hospital stay and things have been pretty calm. The last night of our stay we decided to start a new drug called Clobazam The first night registered no seizures on the EEG, which was a big surprise to me! That's pretty much unheard of around these parts.

The first day he was on the medication he had a few seizures, maybe five or so. And that's been consistent every day since, but it's probably more like ten seizures a day. He seems to get them in clusters like his old seizures. It's funny because it almost seems like his old seizures have been replaced by these new tonic-clonic seizures. Or maybe they are the same seizures, they're just changing with time.

He is, however, not having seizures right after getting his evening medication dose. We give it to him in the evening because our primary issue right now is managing Christian's evenings. I've mentioned it several times that it is extremely difficult on all of us, including Christian, when he is inconsolable. Priority number one is getting that under control.

I'm happy to say that Clobazam has been successful in calming Christian in the evenings. It allows him to chill out and fall asleep. He has so far had easier days, less agitation, and an easier time relaxing. The best part about this is it hasn't really compromised his daytime manner. He doesn't seem any less alert or any more lethargic, which was a big concern of mine. He is, obviously, lethargic right after he gets the med but that may change, in fact all of this may change, as he gets used to the new medication. Hopefully, our new peaceful evenings won't change. We like those.

The prescription does call for us to increase the dose after a week to twice a day instead of once a day. I'm trying to figure that out because I don't want him lethargic and sleepy for school. Not sure how to proceed with that.

But for now, Christian seems a little more peaceful. And a little more vocal, interestingly enough. The seizures are secondary. If we can make sure he is comfortable and happy in the evenings, mission accomplished.

Now, shhhhh...babies are sleeping.

Peace.

No, that's not a rug snuggled up to Christian. That's our dog, Ruby.

EEG Report Findings

Blogging from hospital land tonight. We thought we might be able to bust out today, but, alas, we've decided to stay another twenty four hours.



It's definitely not that Christian didn't perform by showing off his seizure talents. Oh, he performed. I knew he would. These new seizures are hard and they happen about 10-15 times a day. They seem to get a little longer with each one. His face gets red and he starts breathing faster, as noted by the respiration alarm that goes off mid seizure after he exceeds the normal limit.

We got the results from the EEG over the last thirty six hours or so. I actually find them very interesting and very telling. So here goes.

He is experiencing classic tonic-clonic seizures. That's obvious by the looks of things. But, in addition, for the first time I got some further information about his EEG patterns. Christian's EEG is abnormal. I know this and I know that aside from Divine intervention, this will be his brain for the rest of his life. It just is. But what's fascinating is that he has slow brain waves, he gets a sharp spike at the onset of a seizure, then the waves go flat, then they enter into "normal" range while the seizure is still happening. After the seizure they settle back down into his regular abnormal, slow waves.

I've always kind of believed that seizures are the injured brain's way of trying to make connections and misfiring. During some of Christian's seizures, we've witnessed a clarity fall over him. I saw his first attempts at smiling during a short seizure. And during these new larger ones, he's been vocalizing, almost yelling through the duration of the seizure.

Now, neurologists may argue this means nothing other than that Christian has a severely abnormal brain pattern (not our neurologists, the one who read the EEG actually thought it was quite interesting). But I think this EEG just proves what we've thought all along - that some of these seizures are his brain's way of making connections, no matter how abnormally it's done.

Furthermore, and this is just a Momma's speculation, but I think the Ambien brought on these new, more intense seizures because it was too much for Christian's brain to handle. It was waking too much up at once maybe?

And then Christian's brain was like - I can't handle this! I'm wiggin' out, Bro!

And then Christian was all - Let's get it together, Brain. Not cool, Dude. Not cool.

This is what a hospitalization in isolation from my normal life does to me. I think Christian and his brain are having conversations.

Anyway, I'm so glad we have the team of neurologists and epileptologists working with us. They are so cool, so thorough, so accessible, so...un-neurologist like.

Despite these findings and our previous decision not to medicate, we are going to try Clobazam. These new seizures are just too hard on Christian and I fear they could get even more intense. I know when to fold. Besides that, we still need to address Christian's evening time freak outs. And we're hoping the Clobazam will kill two birds with one stone, being that it's in the Valium family. I'm hoping it will calm him, at the very least.

So here's to another day in the hospital! Yipeee! Momma, Christian, and Christian's brain signing off.

This time next week.

A few randoms...

First, I'll start with my gratitude for how much support and kind words you all give to our family from near and far. I read every comment, every email, and I appreciate every thought and prayer you send up for us.

Second, I met someone today! It was another mom of a special little girl who is joining Christian's preschool class! Christian is the only child who uses a wheelchair in his classroom but not anymore! He has a buddy now. I spotted her from far away, as I have now gained special needs radar. And, of course, I tracked them down, introduced myself and insisted we be best friends and have play dates as I do with all moms I see with special kids. Not really, but kind of. I did introduce myself. I did track her down. And maybe I suggested a play date, but that's all I'm admitting to.

Third, speaking of school...Christian decided to straighten his arms out, probably because of a startle, which led to him knocking the tray up so that it hit him in the face. Thus, resulting in a bloody lip. First fight at school. With his tray. Awesome. It was probably because he was distracted by the new girl.

Fourth, and this one is the biggie, this time next week we will be admitted to UMC for Christian's first inpatient stay since coming home from the hospital. We've been lucky enough to avoid any type of hospital stay for anything. This is a first. Why are we planning a stay at UMC? Well, ever since the introduction of Ambien, unfortunately we've witnessed a new seizure. I've been pretty lax about the seizure situation for a while, deciding that the VNS implant was giving us enough control and his daily spasms were not troublesome. Then we decided to introduce Ambien. And quickly after we noticed some harder, longer seizures that looked different than anything we had seen before. They didn't go away after we stopped the Ambien.

Now they are a daily occurrence. They happen several times a day. He jerks his arms out with force (which may have been what contributed to his bloody lip today), turns to his side and starts breathing really fast. It lasts from 5-10 seconds. I've used the magnet to swipe over his VNS in order to stop the seizure and it works in shortening them but it doesn't prevent the next one from happening. The thing that scares me the most is the breathing. I don't mess around with that. So it's time to take action.

Because this is a new kind of seizure, his new neurologist wants to monitor him for three to five days inpatient. So that means we have to be admitted to the hospital. I really don't think we'll be staying even three days because Christian will give them enough date in a day's time. Needless to say, I'm hoping for a less than 48 hour stay. I'm glad this monitoring is happening because we haven't done an EEG for over a year and this will be an opportunity for the new doctor to look at an up to date EEG and figure out a plan of action. I'm hoping he won't give me a laundry list of medications to start him on.

I'm trying to think positive. Fresh eyes, fresh prospective. I really just want back the Christian I had before we decided to try Ambien. Live and learn.

What kind of mother is she?

"Watch kids around water!!!"

I see this everywhere. Or maybe I don't see it everywhere, but when I do see it, I'm extra sensitive to it. It's as if it appears to me italicized, bolded, underlined, with three exclamation points.

Probably because when I see it, I'm reminded of that day and I feel like it's someone yelling at me, specifically.

Remember? Watch your kids! We don't want to have to tell you again!

It's warmer this year and the warmth came earlier than usual to some parts of the country. I've unfortunately already heard about near drownings and drownings, which are actually not weather specific but they do tend to increase during the warmer months for obvious reasons.

When I see these tragic stories online, I've ventured to the comments section and I'm reminded of what people think of mothers like me.

Why wasn't she watching her kid?!

She should be thrown in jail!

Where was his mother?!

It's neglect!

She should burn in hell!

What kind of mother doesn't keep an eye on her toddler every second of the day?

What kind of MOTHER IS SHE?

And I've seen worse. It's not surprising, but it takes me back to that time. I used to be that person. The person that rationalized why it wouldn't happen to me and my child because I took precaution xyz so that would never happen to us. It's a coping mechanism and I get it.

But then it happened to me.

The comments don't sting so much for me anymore because I've dealt (am dealing) with my guilt. I'm totally stealing this from a good friend who said having her accident happen on her watch was a gift. I don't walk around with anger toward anyone else. I know exactly what happened, there is no question. And I have no one else to blame but myself. That is, ironically, a gift. It's manageable. It's something I have worked on.

"What kind of mother is she?!"

Well, let me tell you.

I take my oldest to football practice and my youngest to ISR so she'll know how to save herself should she fall into a pool (and she does know how to save herself). I exclusively breastfed all of my children and started them on their first solids - a banana - at around six months old. I covered all of the electrical outlets with plastic covers and the bottom cabinets are also baby proofed. I put my kids to sleep on their side or back without stuffed animals or blankets in the crib to avoid suffocation. I took all my babies to baby gymboree classes and stayed home with each one of them for at least some portion of their babyhood. I questioned vaccines, refusing to consent to the chicken pox vaccine twelve years ago.

I'm not trying to prove that I'm a good mother, but I'm trying to point out that I don't consider any of the above within the definition of neglect. I did everything other mothers do to take care of their babies. I don't take comments on random articles to heart so much for myself, but I do get protective of other moms. Moms just like me. Moms who love their children, but made a mistake. Maybe there was distraction involved, maybe miscommunication, whatever the cause, it is a far cry from neglect. And to reason away the fact that something like this could never happen to you negates that there are accidents in this world. You get comfortable with your surroundings thinking you know the layout and cause and effect at every turn in your own home. And then you're proven wrong.

The worst mistake you can make is to think an accident of great magnitude will never happen to you.

Place of acceptance.

Christian had a play date a few weekends ago with his buddy Quentin. It was really a double play date. Let's just say the boys got to benefit from the moms wanting to bake chocolate things and eat them with a side of wine. Lucky kids, lucky moms.

We got to talking, as fellow moms tend to do when there is chocolate and wine involved. We started talking about trying new things with our boys. But not in the way that you think.

I'm just going to go ahead and say it - the truth. Truth is, I don't want to try new things anymore. It doesn't mean I won't. I just don't want to.

Trying new things puts me in a different frame of mind. I feel like I've come into the beautiful world of acceptance. This world runs a little more smoothly. It makes for a little more calm. And it's happy there. Blissfully unaware of what may or may not send your child into a tailspin.

When I try something new, I leave that world just a little bit. I'm all of the sudden on alert for anything "new" or different. Anything "better."

Did I see it? Is that different? Has he been doing that all along? Am I seeing things? Maybe it's just because he's sick? Is that a seizure or is he excited?

I poke around, observing Christian as if he were a patient and not my son. And when things turn out differently than expected, there is a level of disappointment. Then I'm really not in the world of acceptance any longer. I've taken the off ramp and I need to pull over.

I've felt like this for a while now. At least a year. That's why I haven't been overly anxious to travel for therapies or really try anything new for improvement. It wasn't until we had the opportunity to try Ambien that I got anxious again. Anxious for better. Anxious for more.

The Ambien turned Christian into a child that was a different Christian. Not better. Just different. I didn't know him very well on Ambien. And I'm not sure it really did him any good. But what I can say is that it's been about a month since we stopped, and for the last four weeks I've felt anxious. Anxious to get my old Christian back.

In my last blog post I wrote about missing baby Christian. Well, I've also missed the Christian prior to Ambien. I feel like he's finally settling down from that experience and I am so happy to see my old Christian again. It's like a deep breath. On the exhale, comes a realization that maybe he is better. And maybe it is very much better hanging out in this world of acceptance.

I read a friend's blog (Mason's Mommy) and in it she posted a writing called I am the Child by an unknown author written from the perspective of a child. I was particularly struck by this -

My gift to you is to grant you the freedom to enjoy things as a child, to teach you how much your arms around me mean, to give you love. I give you the gift of simplicity.

Christian's favorite thing in the whole wide world is to be held. And our arms are so important to him. He may not need Ambien. He may not need another therapy trip. But he most certainly needs our arms holding him.

So will we try new things? Sure. But I'm not anxious for it. I want to be in the happy place of acceptance. It makes me a better mom. And I think as long as our arms are around this little boy, he's happy in the place of acceptance, too.

So what's new for now? Hopefully more play dates!

The Guessing Game

Let The Guessing Game begin!

We had a three week run with Ambien. And the overall perception is that it definitely does something to his brain. I got to hear sounds I had never heard. I got to see more smiles and I might have even heard a giggle, still not sure about that.

The first two weeks I loved the Ambien because it seemed to stop his irritability in it's tracks. I would call it his "Happy Juice." It's like he would enter another world. His reactions were quicker, he had more strength. He would stop whining and crying and make other noises. Just like in the stories I've read about, it was like a light switch. It would turn on thirty minutes after giving it to him and dim out about two hours later.

But then the whining and crying came back. And it seemed almost worse. My theory is that the Ambien would make him so tight and toned out that his legs would literally tremble. I think physically, it made him sore, which caused more pain and whining, possibly.

I also think it increased and/or strengthened his seizures. This is not a surprise to me. Any time you mess with an already fragile brain, this is the risk you take. I know this. But the benefit has to be greater than the risk. Is that the case with Ambien? Are we getting greater benefits than risks in terms of seizure activity? I'm not so sure. And it does really put into perspective how mild and, dare I say, under control, his seizures were, now that I see how they've amped up.

Over the last week, we decided to stop the Ambien, due to the increased irritability and seizure activity. I've been observing Christian every day and he's been sort of "off" ever since he was on the Ambien. He's more irritable. His sleeping is off. And the seizures are a stronger version of what he usually has. I've been observing to see if it changes, if he needs to stabilize, or if we need to take further action.

The good news is that he's still moving and looking and reaching. None of that has gone away. He's still got his skillz! And I'm still observing, still unsure. Blaming this all on Ambien and then tonight he comes down with a snotty, green nose. Of course he does. So is it really that something else was brewing all this time? Welcome to life with a non-verbal child - otherwise known as The Guessing Game.

As you can see, I'm stuck. I'm willing to restart the Ambien just to see if that is really what's causing the shift in well being. I mean if he continues or gets worse, that means it's the Ambien, right? Yes, it does give me more smiles, bigger smiles! But I don't want to push this at the expense of his physical comfort. There are twenty-two more hours in a day, and, although those two Ambien hours are very interesting and revealing, Christian's overall contentment is what is THE MOST important thing for those remaining twenty-two hours.

What to do? What to do? So far, it will be waiting to see if he's coming down with something. Because if that's the case, it will explain this last week. If not, The Guessing Game continues.

This is your brain on Ambien.

We've been using Ambien for about three weeks now and I've got some things to say about it. Nothing definitive. And maybe nothing that even makes complete sense. But I wanted to share.

Ambien does stuff. There's no denying that. There is an effect. I don't have to look for it or figure it out. About twenty minutes after it hits Christian's system, he is different. The look on his face, in his eyes, his heart rate, his body - it's all very different.

Noticing there is a clear as day difference is the easiest part. There are so many therapies and medications that I've had to hem and haw and make sense of whether or not they really have an affect. Not Ambien.

But I still can't make sense of it. I gave him a dose during OT and speech so they could witness it for themselves. They saw differences. But they couldn't make sense of it either. It's like there is too much going on at once to even give any yay or nay opinions on what we're seeing.

There is more movement, but more involuntary movement. Less coordination, but more strength. A lot more tone and posturing, but using it to roll. There is focus in his eyes, but it's hard for his body to relax. He's constantly moving. It's amplified disorganization. He's wired, there's no doubt about that. He makes sounds I've never heard before. He smiles more. His heart rate increases and his cheeks flush.

In about two hours he comes back to regular Christian. Regular Christian has more accuracy, more range, more relaxation, but movements are slower, far slower, and less consistent. Regular Christian floats in and out of attention.

But today, we tried Ambien in the morning. I didn't want to try it in conjunction with PT because his tone is just so high that he wouldn't be able to stretch or relax at all. As he was on his way back to regular Christian I bounced him on the yoga ball, which he usually likes. He's also always likes when we take his arms and pat the ball like a drum. So as I was drumming the ball with his hands, his hand opened up and he leaned into what we were doing. Then he lifted his head and gave me the biggest smile he's given me to date.

I cried happy tears.

I tried to duplicate it. I balanced him on the ball, tried my best to drum the ball and take video at the same time. Ummm, no. It was not happening. The moment had passed. But it's mine forever.

So I wanted to show you all what Christian looks like on Ambien. After watching the videos I decided it really doesn't do the actual affect of Ambien justice. Especially if you don't know regular Christian very well. But I'm sharing anyway.

Remember...these movements are very subtle and can be very slow. So if you're in a hurry, keep it moving!

Make a video - it's fun, easy and free!
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This next video is of Christian's "rolling." I put rolling in quotes because he uses all of his extension and tone to do this. This isn't surprising because his tone and extension are triggered whenever he tries to move. This is just how Christian's brain thinks the body should move. So this "rolling" is not the PT standard for proper rolling by any means. But he does it. And Ambien gives him the extra tone and strength to get completely over to his back. It's not one complete movement so bare with the video. It will come.

Wait for it....wait...for...it....

Make a video - it's fun, easy and free!
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Are we going to stick with Ambien? Jury is still out. I'm not sure all that extra tone and posturing is good for him. And, of course, with brain stimulation comes more seizures. It's just law - when the brain is messed with that's what happens. (You probably noticed a couple of jerks on the videos.) To be continued...again...

And just for some comic relief, here's a video of little sister. Going through the videos, I forgot I took this one and it made me laugh all over again. Didn't you know? Lola is a budding superstar!

Make a video - it's fun, easy and free!
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Adventures in Ambien

Last I updated, we were about to fill our prescription of Ambien (Zolpidem).

The prescription was filled last Friday, and we had lift off.

We started with the lowest dosage, 2.5mg at around 5:30PM because the primary reason for the Ambien trial was for sleep. This time of day is when the "whineys" come out so naturally it's when Christian would need help falling asleep.

About a half hour after I gave him the Ambien I immediately noticed that he was more alert. He wasn't fussing much at all, but he had a lot of tone and was trying to arch a lot. This happens when he's trying to move sometimes and it used to happen a lot more closer to the time of the accident and again when we were weaning him off baclofen.

The alertness lasted about two hours and then he was calm again and ready to go to bed. Night one on Ambien was a bust in the sleeping department. At that point I still questioned whether it was the Ambien that made Christian act differently or just a fluke.

The second evening we gave Christian the same amount at the same time and the same thing happened. He was much more alert, he was turning his head from side to side (which isn't all that normal for Christian because he can't get stuck to the left), moving his hands, and I was sure it was because of the Ambien.

By Sunday (yesterday) it was evident that the pendulum that is Ambien was not going to swing toward the sleep option for Christian. It is definitely a brain stimulant for him. So I questioned whether we should be giving it to him in the evening when he's supposed to be winding down. We did have room to increase the dosage to 5mg so we decided to do that to see if that would induce some type of sleep. (This amount came with permission from his neurologist). Maybe the dosage wasn't enough. So we tried the full tablet of 5mg last night and, boy, was that an experience.

Christian was on brain overload. He was completely flexed but moving his hands pretty much nonstop. Laying down he was moving his head back and forth from side to side. He wasn't fussing that much but there was a moment when I had him in the kitchen with me while I was making dinner. Lola pushed him in his chair over to the counter so she could crawl up and "help" me cook. I grabbed her and told her she had to get out of the kitchen and then as I pushed Christian away from the counter I said, "That means you, too!" In response he proceeded to give me a look with an expression I'd never seen him make before as he grunted at me in a sound I've also never heard him make.

He was also using so much tone, when I put him on his elbows in prone position he used his tone and extension to arch and roll his way over to his back again and again, and quicker than ever, too.

But it was just too much for him. It was too much on his little brain, I believe. He was so stimulated, I actually got a little nervous about it, because one cheek started to flush. It was like it amplified his brain's disorganization. Every move he made was more constant, more frequent, but he couldn't make sense of it or put it together.

Luckily, Ambien has a short lifespan - maybe a two hour window. It's meant to put someone to sleep so it doesn't last a long time. Which is good in this instance because when it was too much for him, it only lasted a little while and then he eased back into regular Christian without a hiccup. And the funny thing is that it made him so alert that it actually ended up wearing him out and allowing him to sleep! Round about consequences, I guess.

So tonight I went back to the original lower dosage and he handled that fine. He was still alert and moving all over. He vocalizes a lot more, too, and in a slightly different tone than I've heard him before. Since giving it to him I've seen a lot more of his little half smiles and that has happened while on the Ambien but mostly in between doses. And right after he eased back into regular Christian, he fell asleep.

I can say without a doubt Ambien is a stimulant and causes an opposite effect on Christian's brain than what it is intended for. We're going to stick with it and see if we can put it to use but I'm contemplating giving it to him in the morning so he can get some use out of it at school. I know it's not hurting him because he would whine and cry through the whole thing if it were any bit uncomfortable. He tolerates it really well.

Ambien is sticking around and our adventure with it continues...

Finding the better.

Christian is getting Ambien. 

And why Ambien could potentially be such a big deal can be found in this article.

I just wanted to go ahead and put it out there because I tried to tell the story twice with all of my thoughts and analysis and play by play. I told it once to my mother and once to my husband and the consensus was: Get to the point already!

So I did. Now comes all my thoughts, analysis, and play by play.

Today we had a neurology appointment. And even though my first instinct is to dread this type of appointment, it isn't so dreadful anymore, honestly. I actually kind of look forward to them because we have a new neurologist and we increase and tweak his VNS every time we go, which always brings good things.

But for today's meeting I had three new issues I wanted to discuss:

1) Clobazam: This is a new seizure drug we are considering. It's newly approved by the FDA and has the same affect as Valium minus the sedation. Sounds good to me, but I'm always skeptical about introducing new drugs. Especially when Christian is making progress and doing well. So why try it? Well...to find the better, right? Gah! See my predicament. It's a crap shoot.

2) Christian's Evenings: I think I've mentioned this before, but I'm not sure how much I've elaborated about the extent of Christian's irritability in the evenings. He gets fussy and wants to be held around 4PM most days. This turns into crying and then only calming if I hold him. And often this can also snowball into a sobbing, inconsolable Christian. It's leading up to bed time and it's as if he just cannot fall asleep. He doesn't seem to be in pain because if he was, he'd wince or stiffen up. He just sobs and cries - red face, tears, moaning, just sobbing. It can go on for hours. And we have nothing to help him except our Christian cocktail: Melatonin and Ibuprofen. Sometimes it works. Sometimes it doesn't. And I'll tell you what, it's a mind-rhymes with duck. I don't have a better word. Because that's just what it is. It is mentally, emotionally, and physically exhausting. So, yeah, I wanted to discuss a solution to this.

3) Ambien: Read the article linked above to get the full explanation. But basically it has the potential to wake up the brain. We've tried another stimulant called Amantadine about a year and half ago. For the first day after Christian tried it he would get really alert but then after the first day he would get really irritable, almost overstimulated. So we stopped. Ambien is controversial and I've known about it for a while. There aren't a lot of domestic studies about it's use, but there are some miraculous results. I know better than to think this is any kind of cure. But it doesn't hurt to try. You know...to find the better. I've heard of a lot of doctors refusing to prescribe Ambien to children. I brought it to our ex-neuro and he knew nothing about the brain injury studies or cases. Shocker.

So this is how it went down. I mentioned Christian's evening episodes first, because, to be 100% honest, that's the whole reason I'm interested in the Clobazam in the first place. We can live with these little seizures. We've learned to. They're part of him, they don't really get in his way, I don't think. I really just wanted something to give him so that he will chill. the. hell. out. in the evenings. And being in the Valium family, it sounded perfect.

So the doctor asked me if it was a problem falling asleep. I've always thought that had something to do with it! It's like he just can't fall asleep. And then once he finally does, he's out for most the night. And he wakes up fine in the morning like nothing ever happened. So the doctor started talking about sleeping aides. That's when he said it.

Ambien.

Amba-what? Did he just say what I think he said? 

He did. Totally unprovoked by me. I hadn't even mentioned it yet. So I got excited.

Ambien is a sleep aid. But it has been found to have the opposite affect on the brain injured, the comatose, and patients in a vegetative state (lovely). 

So I casually mention to him those stories I've read about it "awakening" those who need "awakenings." 

He said that, yes, he knew about those. He also mentioned there haven't been a lot of controlled studies on it's use and that it has been more effective on those who are actually comatose, not those already awake. But that we could try it for both - his sleeplessness or to wake up his noggin. Two birds, one stone. Oh, I love me some two birds, one stone action.

We also agreed that we would put the Clobazam on hold until we knew if the Ambien was doing anything. He said he didn't think it would be a good idea to start him on two meds at the same time. You took the words right out of my mouth, Doc!

So this appointment went too well. No struggle? No begging? No frustration? What is going on around here!? I think we've hit neurologist gold with this one.

I called the pharmacy to see if they had the prescription and the pharmacist took the liberty of putting it aside so she could call the doctor to make sure this is what he meant because it's not usually given to kids under the age of six. I wasn't going to argue with her after business hours. But I assured her Ambien is what he meant and thanked her for her concern and follow up. It had gone so easily so far, of course we'd have some type of hiccup.

We're starting out with 2.5 mg to 5 mg per day in the evenings, since our main intent was to calm him in the evening. If it does make him sleepy, I don't want to give it to him in the morning.

Now, my disclaimer is that I understand this may or may not "wake up" Christian. I understand it may not do anything. I've learned by now that someone else's miracle may not be Christian's and I'm at peace with that. So I have an open mind and a guarded heart with this new experiment. It will do one of three things - nothing (I can live with that, it won't be the first time), help him fall asleep, or help him cognitively. 

It's all about finding the better.

The Tribe: A Mini Reunion

Mini Tribe Reunion!

And by "tribe" I mean the Near Drown Tribe. That's what we call ourselves. We have shirts and everything.

These are our babies. Although they don't look very much like babies. They are, in fact, giant babies.

Our boys.

(l-r: Christian, Seth, Santana, Joey)

A few of the tribe members were in Phoenix for therapy and one actually lives there. I live about an hour and half away so we all decided to meet and have a mini-reunion at Rainforest Cafe!

And we were rolling pretty deep with our crew. And I mean that in the most literal sense.

We also made our kids try on hats. Because, rumor has it that's what the crazy tribe members do.

Santana

Joey

They are so over this.

"No, really, Mom. I'm over this."

It was so...rejuvenating. Not rejuvenating like a facial or a massage. It was rejuvenating being surrounded by everyone and their kids. We rolled right on into that restaurant and felt like regular moms with regular kids. We were just moms with our boys. It's what normal feels like.

We also talked about how we missed our absent tribe members and can't wait to see them again soon.

This tribe of women is amazing and they are such a gift to me and they don't even know it.

The walking wounded.

In first aid and triage, the walking wounded are injured persons who are of a relatively low priority. These patients are conscious and breathing and usually have only relatively minor injuries; thus they are capable of walking. Depending on the resources available, and the abilities of the injured persons, these people may sometimes be used to assist treatment of more seriously injured patients, or assist with other tasks. - Wikipedia

I was reading a review about a new movie coming out about a family grieving over loosing their husband and father to 9/11. The review referred to the boy in the story as the Walking Wounded.


Walking wounded.

Such a perfectly simple description of those who have endured loss, pain, and grief.

So I googled it.

...conscious and breathing...capable of walking...

I write a lot about intentionally seeking out joy and happiness and it really being a choice in life. In our lives we've made a conscious effort to do this for our sanity and the happiness and survival of our family.

When the accident first happened with Christian, I mistakenly thought things would gradually just get better and better. I had sad days, but I was certain that eventually they'd go away.

I'd have rough days, very emotional weeks, and then I'd be over it. Happy again. Rough days were behind me and I was forward, full steam ahead.

Then out of nowhere, I was sad again. It would be set off by a picture I had never seen of Christian as a baby, happy and wide eyed. It could be for no reason at all and I was right back where I was in the beginning - broken hearted and just...well, broken.

It's called grief. And if I take myself and my emotions out of the equation, it is quite fascinating how this little bastard works.

It weaves itself in and out of our lives, piercing everything it touches. It makes us feel awful, it makes us feel validated, it makes us feel cleansed. It wraps itself around our old family photos, and sits heavy on our hearts when it is quiet and we're alone.

This kind of grieving - the grieving of a special needs parent - it comes in what I can only describe as levels.

When we left the hospital, as I said, I thought things would just continue to improve and improve and improve. Maybe Christian would be slightly delayed. But he'd catch up, right?

Levels.

I've learned from other parents. I've seen their grief. And it, too, is in levels. Half way between life and death.

...He's not smiling...She doesn't even move...He has a trache...He has pneumonia and he's in the hospital again...surgery? again?...He won't stop crying...She won't sleep...She throws fits...He has neurostorms...She has seizures...medications aren't working...We have to meet with the palliative care team...we have to keep him comfortable until the end...He doesn't like to be touched...He can't see...She doesn't talk, just screams...Does he even know who I am?...God, just let him make it through the night...Why are other children doing better than my child?...We need miracles...

Levels of grief.

Level 1 - We think there may be seizures. Level 2 - Medications aren't working. Level 3 - Seizures are intractable.

Level 1 - He probably won't walk. Level 2 - Not enough weight baring. Level 3 - Bone quality is deteriorating. Level 4 - Hairline fractures. Level 5 - Dislocated hips. Level 6 - Painful surgery.

Each level is a new found pile of grief to step in.

And they come in little droplets or they come in waves. Grief hides in things like cartoon characters you're child should be obsessed with. It's waiting in thoughts of grandchildren that will never be. It's all over your spouse's face when he talks about playing catch someday with his son, or his dreams of it, anyway. It's there. And really never, ever goes away.

When I hear the stories of mothers and fathers of children who've passed, I feel their grief. It goes beyond the polite, "I can't even imagine..." Because I can, and I do, and I can feel it. It's a heightened perception of pain that I now possess and part of me is thankful for that. The other part of me wants to give it back.

Luckily, grief doesn't stick around for too long these days. But all too often I meet or hear about families who are just at Level 1. And I'm sad for them and their long journey ahead.

The movie review called the little boy the Walking Wounded. But the most important part was when he said, "...But he is still walking."

We're still walking.

The Verdict: Spine and Hips and Curls

We visited Christian's orthopedist. It was as expected. Not great. But not the end of the world.

The verdict:

HIPS:

About a year and a half ago, x-rays showed about a 30% slippage on both sides. Now, the doctor estimates his left hip is about 90% out of socket and the right one is about 15%. It makes sense because Christian's left side is his tighter side. Christian was also tighter than usual today and so I think the numbers might be off a little with the left hip maybe being around 80% (maybe not) and the right being more than 15%. The estimates were also done by two different doctors at two different hospitals in two different states so there is that.

SPINE:

If you look in the upper right hand corner by his neck you can see his VNS. Look below that and you can see part of the device where the screen cuts off. Cool!

Christian has about a 45 degree curve to the right. It's at the bottom of his spine so it doesn't threaten any major organs at this point. We're working on stretching that right side out at the hip.

First, I have to say we are blessed with an excellent ortho doctor. He is kind, knowledgeable, and conservative with his recommendations. Having a doctor like him makes it easier to handle news like this and make a plan.

He said regarding Christian's hips, we can let the left hip go ahead and fall out of socket or we can operate and put the hip back in the socket. He said he has had patients do both and has had an equal amount of success and failure with both options. We are going to take another look in three months. If there will be any surgery, it will be on summer break.

As for the spine, at this point the doctor wasn't too concerned about it. If it gets any worse we might have to consider spine straightening surgery, but we're now on alert that we really have to be diligent in stretching and straightening that spine as much as possible. He didn't suggest a brace and actually discouraged its use, but I'm not sold on that. I'm still going to research the option.

We both agree that at this point, unless something is causing pain, we are hesitant to plan any surgeries. We'll reconvene in three months and come up with a better game plan.

And my feelings on the subject...I was fine all day, really. I hyped myself up for an appointment with horrendous results. I don't know what "horrendous results" would be - an arm where a leg should be? I just psyched myself out. The appointment wasn't horrible and the results were nothing I couldn't see on my own or anything I didn't already know.

I still need to process this. I know as my medical mind is put to bed, the mommy mind and heart emerges. Then it's different. Then it stings.

But it's still the same old Christian. It doesn't change who he is right now, but I firmly believe that knowledge is power and knowing is freeing. We now know what we're dealing with and we can move forward.

We'll have some big decisions to make in the future, I'm sure. This is part of Christian's life.

But tonight we decided to focus on the beautiful head of curls he's growing.

This is after bath time. And clearly, before bed time.

He is a precious, angelic, broken little soul.

And we deeply love him so.

2011 in Review.

What happened in 2011?

Well, let me tell you...

Wait...what did happen in 2011???

I wanted to play that blog game where I recap every month with the first sentence from every first blog of each month of 2011.

Then I thought - Well, there really isn't that much to report. Maybe I'll just recap in a general summary.

And by 'general summary' I really mean long winded and wordy paragraphs.

Just for kicks I started looking back and, Yowza! A lot happened, to say the least. A lot of good. A lot of triumphs. A lot of happy moments. It was all a blur for a second but I really do want to play the blog game and recap just to show you all how far we've come. (Like I really have to remind you! Okay, maybe I need to remind myself.)

So let's play...

January: The first day of 2011 was like a "non-day." 
Thinking back, the first day of 2011 was the perfect preview to the rest of the year. Plans?! Out the window. 2011 definitely taught us about acceptance and going with the flow.

February: Too much too soon?

Right around the beginning of the year we were trying to figure out the ketogenic diet and weaning of medication all at the same time. Sabril was our last medication and Christian weaned off of it beautifully until we hit the last 2mL's. It took forever to wean him off and since then we've decided not to medicate for seizures. For now.

March: I should never have talked crap about that damn cold and flu monster because he beat down our door with furry ready to take us all!
Christian was hit by a really serious respiratory virus. It was actually the most serious illness he has come down with. Luckily, we haven't seen the likes of anything like that since. Thank God.

April: Coming off of a blog about kindness, this blog may not seem very kind.
Trouble with feeding pumps. I'm happy to say we don't use one anymore unless it's for hydration with Pedialite. Now we use syringes. Syringes aren't all together innocent in their trouble making but at least there is no beep...beep...beeping!

May: Guess what last week was...Easter!
I posted late about Easter. But what I was mostly proud of was that finding Easter basket goodies for Christian came so easily. Enter electric Sponge Bob toothbrush!

June: We had preschool meetings #2 and #3 this week.

We toured special needs programs that would be great for Christian to start school in the fall!

July: dum spiro spero

While I breath, I hope. Christian finally smiled. Best. Gift. Ever.

August: Today is Christian's birthday!
And we got to spend it in Mexico! And, more importantly, on the beach!

September: I noticed lately that Christian has an easier time moving if his upper body is inclined a little.
Christian started moving more and reaching for things more consistently.

October: We visited the GI doctor the other day.
And we all know how that went. We started Christian on the blended diet in 2011 and our (former) GI doctor was not very approving.

November: I was all set to tell everyone about Christian's new chair and how perfect it is for him.
Christian got a new wheelchair this year! He also got a new Special Tomato Chair for home, a swing set for outside, and a new car seat. His new wheel chair is so perfect, we went for our first grocery shopping trip together!

December: Armsy (adj.): The act of moving arms a lot.
Christian has been moving his arms a lot!


Other highlights not captured by the first sentence of the first blog of each months include:

We went blended full time!

A VNS surgery and implant.

We ran our first 5K marathon with MyTeam Triumph!

I was able to attend the most amazing retreat with fellow near drown mommies in Seattle.

Christian started pre-school and we've gained more of Christian back in 2011 then we've had since 2009.

Oh yeah, and did I mention Christian smiled???

And what's to come in the new year?

We have a new Physical Therapist who will be working with Christian at home in addition to the therapies he gets at school. Super Excited about her!

And we've just started working with a new neurologist. There might be some new changes in February.

And that's it.

Seriously. It's both a feeling of uneasiness and excitement not having anything planned. I know there will be more trips to the ocean. More trips to Mexico. More time with friends. More 5K's, hopefully.

It's a whole wide open year for us full of possibility. It's a blank canvas and we're ready to start painting!