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 It's funny because it almost seems like his old seizures have been replaced by these new tonic-clonic seizures.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.

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!
www.onetruemedia.com

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!
www.onetruemedia.com

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 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.

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!



Doctor Shopping

Since we're in the mood for updates....

We have an important appointment tomorrow afternoon. We've waited three months and tomorrow is finally the day.

We are in the market for a new neurologist. We've had the same one, pretty much, for the last two years. But it's time to move on.

Why are we moving on? Well, anyone who knows this particular neurologist often has something to say about his bedside manner, his lack of personality, as well as mentioning all of his other unsavory attributes. Let's just say he rubs a lot of people the wrong way. That was evident upon our first meeting when he told us in so many words we should more or less consider pulling the plug on Christian if things should go down hill. Consider us rubbed wrong.

Since that blessed day, I've learned a lot. I've learned to respect him in a funny way. He's very smart. And he's definitely an acquired taste. It's either his patients love him or hate him. More often then not, it's the latter.

I don't fault him for his bedside manner. I don't need coddling anymore. I've dealt with enough doctors and specialists to know it's their jobs to state the facts for our own good. Period. I can't get hung up on whether someone is nice to me or not while doing it.

The reason we've decided that it's time for a change in neurologists is because Christian's current neurologist has had to refer us to other neurologists twice. Once, when I inquired about the keto diet. He admitted he didn't have experience with it so he referred us to a neuro in Phoenix. The second time I inquired about the VNS. Again, he had limited experience and would have to refer me elsewhere. I've asked him about experimental drugs and he has limited knowledge. Our relationship with this neurologist has turned into an ends to a mean. He prescribes medicine and administers botox. End of story.

The point is when it comes to the treatment of kids like Christian, he practices medicine in a box. Christian is outside of that box. And he needs outside of the box thinking. This doctor's main focus is to maintain Christian. I need a neurologist who seeks to progress Christian. I didn't know there was a different until I met the neurologist in Phoenix who oversaw the keto diet. She was assertive in that we couldn't just accept the current circumstances, we had to seek out other options for the best Christian we could get. (Light bulb!)

Other reasons we're choosing to make the move involve this doctor just not expecting anything from Christian. He hardly knows him and he's been his neurologist for over two years. And he has never, ever said anything remotely positive about Christian. No "He looks good!" No "He's doing well." Maybe that's not his job. Maybe that's coddling. But people who truly know Christian know that he is doing so much better and don't hesitate to say it. Note to neurologists: Parents are looking for your acceptance and validation of any progresses, no matter how minute, whether we want to admit it or not.

So we have an appointment with the neurologist who wears the big NO SEIZURES pin on his lab coat. He's the doctor who initially evaluated Christian for the VNS. He's an adult neurologist who sees some children and his team of epileptologists has been amazing.

If for some reason this doctor tomorrow can't take Christian on as a patient, we'll go with plan B - the awesome neurologist in Phoenix who introduced me to the idea of progress in the first place.

I'm praying we'll find a good fit and that tomorrow's appointment will be productive in our search for a new neurologist.

Stay tuned!

Christmas Spirit

Last weekend I really wanted to find some Christmas spirit. I looked long and hard. We (and when I say "we" I mean Manny) pulled out boxes. I stared at what was inside of them. Nope. It wasn't there.

And I know spirit isn't about things, it's about a message. It's about the birth of Jesus Christ. It's about family and loved ones. I know all this. But having some twinkly lights up and a Christmas tree strewn with decorations sure does help build that spirit. Alas, it all felt very overwhelming.

Not realizing a pretty fierce cough and cold were brewing, I chalked it up to me just being a Grinch. Then I was mad at myself for not providing my kids with happy - twinkling lights - cookies baking - Christmas memories. Not only was I having a hard time feeling Christmas spirity, but I was also mad at myself for it. Double downer.

Then it finally hit me. Sunday night, around 8:30PM. I took full advantage and hung up lights, pulled out decorations, and started proving to myself that I, in deed, had some spirit. When it hits you, you can't let that stuff go. Hello, one o'clock in the morning.

Over the past few days, through coughing and sneezing and sniffling, I've found the Christmas spirit. And I have a living room full of lights to prove it.

At this point I like to play the This Time Last Year game. This Time Last Year we were embarking on the Ketogenic Diet. I have to say that it was probably one of the hardest times of our journey, thus far. Not only did it not take flight as we'd hoped and prayed, but Christian did not respond well, physically, and he was pretty miserable for a good part of it. We were pretty much home bound. We couldn't go many places as a family, he wasn't up for it. And even if I didn't express it at the time, it was a dark time for me.

I couldn't understand why, after we had tried everything in our power, weren't we getting the answers and results we wanted. I couldn't understand why we were taking these paths that seemed so perfect it was if God had created those paths just for Christian. Maybe He did. But they seemed like dead ends.

I still don't know what purpose those paths served but I learned a lot from those paths. I learned a lot about what is in our power to do for him. I learned that, dammit, he is just bound and determined to create his own path. He is not going to be like any other child. Sounds simple enough, but we wanted him to be like other children, the success stories, the kids who's seizures were stopped completely due to the keto diet.

That dark time, This Time Last Year, was really necessary looking back. Because it brought me to a path of acceptance. Of course, we want Christian to improve and learn, but most of all we want him to be happy. That is most of all. We accept him. It's taken some time to get here, but we accept the boy God is giving us every day and we accept our life. We embrace it.

Acceptance has given us a sense of freedom. It's given us freedom to move forward as we are right here and right now. In comparison with last year, this is the greatest Christmas gift. It's the source of our Christmas spirit.

Acceptance also comes with a realization that every day is a gift. And every good day, where Christian is up for an adventure? Well, that's cause for celebration. So, if there is a parade, we're going. If there is a race, we're running. If there is a neatly wrapped gift, hand over hand, Christian and I will rip it open with reckless abandon. There is man made snow in the mall courtyard this weekend, it's time to get cold! (But only for a little bit, because we're babies like that.)

My point is that acceptance has allowed us to see each day as a greater gift than the previous. It has allowed us to recognize and appreciate any opportunity for joy because one day, it's inevitable, those opportunities will run out.

Christmas spirit is coming easier and easier. And it's all the more when Lola looks at those lights I hung from the ceiling and says, "Piiity, Mama!" (That's Lola language for "pretty"). And Christian can stare up at the ceiling, too, when he's on his back. Gabe's contribution? He was nice enough to sit and watch Elf with his ol' Mom for a little bit. But only for a little bit. And don't tell his friends.

During the Christmas spirit frenzy (also referred to as decorating), I learned we didn't have a tree topper. I searched far and wide (Walmart and Target) and didn't find one good enough that I actually wanted to spend money on. 

We were already displaying this as part of our Christmas decorations and Manny suggested we put on top of our tree.

They say words have power... 

I think it's appropriate.

The Secret

Sometimes I feel like I'm on a hunt for some sort of secret. Like I know an answer exists to help Christian's tone. I know an answer exists to stop his seizures. I know an answer exists to help him laugh and express himself. I feel like an answer exists, I'm just not privy to it. So I have to hunt and calculate and eliminate and guess and still...I feel like there is a secret being kept from me and sometimes I have no idea how to figure it out.

Christian vomiting is no exception. It's perhaps one of the biggest secrets that I often feel so close to unlocking.

His vomiting comes in cycles. He'll do amazingly well for months. And then out of no where, throwing up is back. Usually, it's brought on by some kind of unsettling in his system. That's pretty obvious, but it usually coincides with illness, colds, teething - again, another secret.

The blended diet has been awesome for Christian, but when Christian got a cold a few weeks ago, he was what I like to call "juicy." He had a lot of mucous in his throat and nose. I've mentioned before that the doctors initially said he had no existing gag or cough reflex, hence the trache placement after his accident. The irony of the situation is that now Christian has a hypersensitive gag! This means that more mucous in the throat leads to gagging. Cut to Christian throwing up his dinner.

I could be having the best day of my life. If he throws up, my day is crap. It flips upside down in a minute. Know why? Because I take it personally. I feel like I'm personally responsible for not figuring out why it's happening. And if I know why it's happening, I'm personally responsible for not figuring out how to make it stop happening. It's all a secret.

Christian has been vomiting again due to some leftover juiciness from the sickies he had a few weeks ago. See I know why, I just don't know the secret to making it go away short of waiting it out. Which, by the way, after all the wracking my brain to find a solution, is what will be the secret. Waiting.

It still doesn't make it fun. Last night he threw up. He had a tough time in the evening holding his food down. Day finished. I finally started venting to my husband. This is how it went...

I feel like it's a big secret!

And I don't know the answer!

I try everything and it still comes back!

What iiiiis it?! Just somebody tell me so I can do it!

Yeah, that was me. And I believe I've vented the same questions for seizures, the keto diet, fill in the blank.

He had very simple words: Maybe we aren't meant to figure it out. Brain injury has a lot of mysteries. Maybe we're not meant to figure out those mysteries yet. Christian is doing well, otherwise. We're doing the best we know how. Well, at least you are. I just watch.

Isn't he a funny one?

Is that the secret? Not trying to figure it out? Some parents decide never to question the doctors or specialists. They just follow the direction on the prescription bottle. Are they on to something? Are they the ones who have it right?

I don't know. Every family does what is best for them. But I'm a big believer that when we know better, we do better. I have this incessant need to understand. Because then I can move forward with a plan. But if I don't understand I can't move forward. And, believe me, I've tried my hardest to follow the whole lean not on my own understanding thing. But for a girl who has a need to understand things, I'm not really great at following the aforementioned instructions. And there are only so many times I can repeat that line about understand before it becomes white noise.

Maybe it is as simple as remembering I'm doing the best I know how.

The good news is that even though Christian had a cold and even though he's been throwing up a little bit, he has gained a whole pound and a half. He's finally at the weight I'm comfortable with - a tall 31.5 pounds. Speaking of secrets, I finally found the secret to getting Christian to gain weight. (I added in extra feeds by making sure Christian eats more frequently during the day, just in case you were wondering.)

This is a good secret to have uncovered because being that Christian is on the blended diet, I am directly responsible for all of his nutrient and calorie intake. So, of course, if my child isn't gaining weight I feel responsible. Just like any other parent would for their child, whether they were eating by mouth or through a tube. Gaining 1.5 pounds is parental success for me.

Despite this recent frustration, I know it will pass soon enough. And looking back to this time last year, Christian is doing so much better now than he was then, which is a testament to how much we have gone through, changed, tweeked, and altered to get him to where he is now.

We've done and are still trying to do the best we can. Simple. No unlocking of secrets required.

The GI Interrogation.

We visited the GI doctor the other day. We hadn't paid him a visit in a good six months. Not since Christian was on the keto diet. And not since we transitioned to a blended diet through his tube.

I think that appointment can be shelved away in category: Sucky Appointments That Make Me Feel Like Crap.

I had to take a few days to sit with my thoughts about the whole thing. I'm still wondering about it. I'm still wondering if we should ever go back there again.

When we first visited this doctor, he had all the answers and really helped us figure out how to get Christian to stop throwing up. He's very smart and it's evident his brain his working faster than he can talk. And he talks fast. But over the next few appointments he started to take on a condescending, questioning (disguised as a voice of devil's advocate) tone, and it really started to irritate me. But I chalked it up to him just being a doctor and using his doctor voice.

A while back I mentioned to him that I'd like to explore a blended diet through the tube. I don't remember exactly what he said but it was definitely not supportive. He shut the conversation down quickly. And if I remember anything I do remember him saying that "formula is a perfectly acceptable form of nutrition for g-tube fed children."

Rehearse much? Jeez, read that off the back of the can, Doctor?

Anyway, we visited the GI doctor on Monday. We needed to renew a prescription and I was also interested in running some blood tests to make sure Christian was getting everything he needed. I also wanted to keep the GI doctor in the loop since so much had changed.

As I mentioned, I'm still trying to sort some of the conversation out, but these are some of the examples of what the doctor said and my corresponding thoughts:

*I will also be referring to Group A. This group is a renowned therapy group specializing in feeding therapy and tube feeding. Our OT is from Group A, which is not their real name, but due to the nature of some of the comments from the doctor, I don't know if I should mention any names.

Me: "Christian is now on a blended diet."
Dr.: "And why did you decide to do that?"
Me: "I was always interested in whole foods for Christian, but he wasn't holding formula down so I decided to go for it because it was at least staying down."
Dr.: "You know there are other things we can do for that. So besides it helping the vomiting, why else would you choose to give him a blended diet? Are you with Group A*?"
Me: "Our OT is from Group A."
Dr.: "That's what I thought. Nobody in this area or surrounding areas decides to do a blended diet except for people working with Group A."

************************************

Dr.: "He looks orange. Does he look orange to you?"
Me: "No." (Confused.)
Dr.: "Are you sure? He looks orange to me. Are you feeding him squash?"
Me: "Not lately. Are you sure it's not me? I wear self tanner and it makes me orange. Are you sure I'm not reflecting off of him?" (I promise I actually said these words.)
Dr.: "No. It's him. He looks orange. Watch, hold your arm up to his. You don't see it?"
(No, I don't see it, weirdo.)

*********************************

Dr.: "So why else would you decide to give him a blended diet."
(Didn't I just answer this question?)
Me:. "He's always had problems with formula, since he started it right after the accident."
Dr.: "Well, his weight hasn't increased by much since last time I saw him. Real food can not reach the calorie content formula has. Real food at it's highest calorie content is only 2/3 of each calorie in formula."
(This is where it gets weird. When Christian was on formula he was gaining too much weight and dr. said something about him being 33 pounds. Then he said something about him loosing weight. But he said Christian shouldn't have gained so much weight! And we saw him six months ago! Was he supposed to have gain a bunch of weight since then? He weighs 29.75 lbs. now. And is right on the curve, by the way.)
Dr.: "The body craves what it is lacking and since Christian can't tell us what he craves, how will you know what to give him?"
(Lola has never told me what she 'craves.' And, p.s., I crave sugar all the time and I highly doubt I'm deficient in sugar because I eat it all the time.)

*********************************

Me: "I just want to see him one to two pounds heavier."
Dr.: "Why?"
Me: "Because I'm his mom and I want to see him robust and solid."
Dr.: "But he's not a baby anymore. Four to six year olds are the skinniest they'll ever be in their life. So it's normal for him to look skinny."
(Weren't you just concerned he wasn't gaining enough weight fast enough?")

**********************************

Me: "I give him kale, apple juice, avocado, olive oil."
Dr.: "Now olive oil can slow things down in the digestive track."
Me: "Actually, he's never been more regular. And it was over night after we started adding blends."
Dr.: "Oh was there a regularity a problem before?"
(No, we just have a prescription of Miralax in his chart for fun. Did you read his chart?)

*************************************

Dr.: "Well it sounds like you are doing a great job at getting him what he needs. If anything I'd be worried you're giving him too much of something...this isn't taking over your whole life, is it?"
Me: "No! I love cooking for him. It feels like he's more a part of the family. It feels less like a medical procedure, like I'm just plugging him in and walking away."
Dr.: "Yup, that's Group A! Those are their partying words!"
(Swear to God, he said 'partying words.' I think he meant parting words. But he seemed pissed off while he said it.)

And then he walked out of the room and I didn't see him again.

I felt interrogated.

There were a lot more little comments he made. But it was like he was insinuating that Group A was swooping down on poor, innocent, formula feeding families - happy in their ways - and pushing evil whole foods on us. And we had no choice but to give our kids a blended diet, because Group A pushed it on us!

That is not the case!!! I have been interested in it since day 1! I asked my OT about it and she gave me a book to read written by the founder of Group A. And then she left the decision up to me. In fact, I made the decision on my own and made the transition. I've asked for suggestions from the OT, but she has never, ever, ever, EVER pushed a blended diet on us. I've also sought out the bulk of blended diet information from...shocker...OTHER PARENTS!

I swear I have never met so much resistance. Even the doctor's own assistant was intrigued by our choice to go blended. Even his assistant! Christian's pediatrician is in total support and even said it's better for him. So why the attitude? Why the lack of respect for our choices? Why be so condescending?

And just because Christian is tube fed, does that make him unworthy of whole foods? Why is this not possible in this doctor's realm of thinking? Why isn't this a practical choice? And why isn't that choice respected?

I'm not mad about this, if that's how I come off. I feel worried. Worried for myself and worried for other families. What if this guy has a bone to pick with Group A and wants to make an example by taking some kind of action? What if he doesn't think we're nourishing our child? I'm confident we are but what if he's not. Then what?

So talk about an interrogation. First he's gaining too much weight, then he's loosing weight too fast, then he hasn't gained enough in the last six months, then maybe he should be skinny, then he looks orange, then maybe he's not getting enough calories, but then maybe he's getting too much of something, then it's all Group A's fault.

Can you say mindf**k?

VNS Scars and Diagram

This VNS business works kind of like medication. It has to be increased to "therapeutic levels" just like medication. We went for our second visit to increase, but I had done some research on the device and found out you can increase the frequency and the strength independently or together.  Right now Christian's VNS has been increased once and it goes off every five minutes.

Because of the nature of Christian's seizures - they're about 1-3 seconds long and happen frequently (as in myocolonic seizures) throughout the day, if you blink you might miss it) - I suggested to the doctor that maybe we could try increasing the frequency instead of the strength this visit.

The doctor, who's an epileptologist here in our city, was in total agreement. So we went for frequency instead of strength this time and now it goes off every three minutes. We'll go back in two months to do another increase, if needed.

I haven't seen any visible differences with the jerks that have wowed me yet, however, I have seen some notable cognitive improvements and he seems way less irritable. I don't know if the two are related but I'm thankful for positive changes in any package they come in! Can I get an amen?!

So I promised to post a picture of what an "increase" looks like...

A lot of beep-o-bop-o-beep and blinking lights and it's done. Space-agey, huh.

(And, please notice the fabulous sitting position I have him in. Second thought, don't notice it. Look away and just know it only lasted for a minute.)

For those who like scars, Christian's got his own collection of them.

The main scar four weeks post surgery. His VNS lies right underneath and you can feel it. It's like a little police badge under his skin.

This is a picture of all of his upper hemisphere scars.

And here is the same picture with a diagram of Christian's VNS scars. Please excuse the 1st grade level handwriting by yours truly, courtesy of the Paint program. Keepin' it real.

You'll see where I labeled a "wire" that connects from the VNS device up to the vagal nerve. You can slightly see it as it resembles a strong vein in his neck.

I have to say, though, that I am loving this time right now with Christian. He hasn't been as upset as he used to be with the nonstop evening-time crying. He's been really alert and aware and I'm loving it. He's also been vocally communicating more without crying, which is awesome. I was holding him on my lap the other day and I looked down and noticed there was a little boy sitting on my lap instead of a baby or even a toddler.

Know what else I love? When I go up to him and say his name and he looks over to me. Or when I come to pick him up at school and he hears my voice and he looks for me.

I caught this listening to mom's voice phenomenon here.

Loving this.



What's Christian Eating?

Back in June we embarked on another journey to blended diet land. I must admit that in the beginning I was unsure, overwhelmed, a little lost, but I knew one thing...I just wanted Christian to be healthy. And no vomiting.

Just a quick synopsis of what led to the decision to go blended: Christian threw up from the first formula feed he had after his accident, sometimes multiple times a day, but every day without fail. Then we changed to an elemental formula that was easier to digest. But the vomiting and reflux persisted for months. We finally visited our first GI doctor who gave us the miracle of Renitadine (an acid reflux med) and that cured all, it seemed, for about a year. Then we switched to the keto diet, which didn't give us any stomach issues with vomiting but did give Christian a lot of constipation. As soon as he came off of the keto diet he started throwing up again. And then it got worse and I couldn't understand why! It was the most frustrating thing! How could something that used to work just no longer work anymore? We were using the same brand of formula, the same medicine for reflux, the same volume, what the hell?!?!

Enter the blended diet.

I first started to introduce it when Christian just wasn't holding feeds. Or he would throw up at least one a day in a large volume. In anticipation of starting the blended diet soon I had purchased a Ninja chopper/blender. So I had that on hand to blend up some banana and avocado. I really didn't know what I was doing. I just tried to figure - what would I feed him if he were sitting down at the table right now asking for food? He held it down better than the formula because, at the very least, the blends were thicker.

And the blending commenced.

I've learned a lot about calories, foods, allergies, and combinations. See, it's all well and good to think - Oh, I'll just give him this! It's 300 calories. But Christian has issues with volume and speed. This means that he can't tolerate large amounts of food pushed into his stomach at once. That is a sure fire recipe for it coming out Exorcist style all over you. So if 300 calories makes a blend that is 300mL and Christian can only tolerate half that in one feeding, well that's only 150 calories. And we're shooting for 1000 a day! This is where it gets hard and this is where we have to get creative. In the beginning of our blended journey he actually lost 3 pounds and I freaked out thinking I was doing a horrible job and what was I thinking and why am I doing this.

But we finally got into a groove. The most immediate benefits were his digestion and constipation. He went from constipation + Miralax = earth shattering, spackled blow outs every few days that were so vile we needed a hazmat suit to change it, to consistent regularity. They don't smell nearly as bad and they come every day without fail without Miralax. They don't hurt him, he doesn't strain, and he's a lot more comfortable. By the way, I have never talked about poop in my life as a conversation topic as much as I have in the last few months, just for the record.

Other benefits are that he's a lot more alert, he gets a variety of foods, it feels like he's eating what we eat and it feels less medical. Benefits also extend to me - the Mommy! One of my favorite things about Christian's new diet is that I get to prepare it and I take a lot of joy in that. It does take work, it does take a lot of preparation, but I do it lovingly counting calories and blending knowing that I'm cooking for my son.

We are not perfect at this. We are not purists. So if we have something for dinner that is well rounded, it goes in the blender for Christian. I also have some quirks I've developed like I make two blends every day. Here are examples of Christian's menu:

Fruit/Grain/Yogurt Blend:
1 Banana
1 Avocado
1 Greek Yogurt
1 cup of Cheerios
8 oz. apple juice
1 jar of baby food (peaches, apple cinnamon oatmeal, or something high calorie)
Frozen strawberries or blueberries
1 Multivitamin
...and some other stuff

Veggie/Meat/Grain Blend:
1 Bushel of Kale or Collard Greens
Spinach
1 jar of baby food (high calorie meats)
1 jar of baby food (squash or sweet potato)
8 oz. of apple juice
Apple sauce
1 boiled chicken breast
1 cup of whole wheat pasta
2 tbl. of olive oil (for calories)
1 multivitamin
1 scoop of protein
...and some other stuff

I make two blends because I just don't like the idea of blending everything together. Nobody told me this was bad and if I can bring myself to do it, it won't be so hard to think of things to make these two blends 1000 calories each. It's just a quirk I have. Fruit and meat blended together? Gross! Some of the fruit blends I make him I'd eat myself, they're so tasty! I should get over it, because, like I said, it would be easier to make one blend a day. But right now, we're doing two.

The examples I provided above are by no means absolute. We trade out. I've added peanut butter and Nutella to boost calories but it seems he has tummy troubles when I add these so I don't anymore. I've added Nutrigrain bars, apple sauce, graham crackers, and homemade mac and cheese. I use apple juice because it's great for constipation. The dietitian isn't a fan because of the sugar but it also has calories so for now we're sticking to it. It's harder to find calories when you can't add a lot of dairy. And another thing, I'm not really that comfortable with cooking meats for his blends other than boiling chicken breast. So for now we do baby food meats, which are already blended and have the calorie count right there on the jar.

We found out Christian was having trouble with dairy after I took him off of it for a week to see what would happen. Nothing happened when I took him off the dairy but when I put him back on it, he started having some diarrhea. The pediatrician suggested adding Greek Yogurt (which is super delicious, by the way, and I think Christian should share this with me) so we do that and we also sometimes add scrambled eggs and instant breakfast powder for extra calories.

With us, it's all about the calories! That's why we use olive oil, too. Since Christian doesn't like a lot of volume, we have to pack as much into each blend as possible. The bigger the blend, the more calories we have to fit into it. And each blend is loosely calculated to 1000 calories each, which gives us 2000 calories for two to three days.

Because I'm paranoid about calories, I also added in 200 calories on a slow feed over night of his old formula. This gives me piece of mind that he's won't be seriously hungry when he wakes up. It also gives me piece of mind that he's getting that extra oomph of calories at the end of the day.

Good things for Christian's body - Kale and collard greens and banana and avocado. Both banana and avocado have a good amount of calories. Avocado is like calorie gold. Kale loves Christian's digestive system and Christian's digestive system loves kale. Do I ever eat it? Hell no. But it's great for Christian, so it's a regular on our menu. I just steam up a whole bushel and it all goes in.

So that's what Christian's menu looks like. It's a work in progress and I'm always experimenting with new things and new ways of giving him food. We don't use a pump for his blends because they're too thick and his stupid pump won't budge. So we bolus the blends (push the food in by tube with a large syringe). But we have to do it slowly. I leave him hooked up to a tube with the syringe at the end with food inside. Then I leave him to sit and play with a toy or watch the window blinds (he loves that) and every time I walk by I push a little in. It works for him. And since I've been doing it like this - no reflux or throw ups.

There you have it. Christian eats food through his tube. What I've explained works for us and us only through trial and error. I tried many times to follow what others were doing and when it wouldn't work for Christian I'd get really frustrated because that's how it's SUPPOSED to be! I had to ditch that attitude and go with what works. 80% blends is good enough for now with the 20% formula over night easing my calorie stress.

Just for your information, Christian is doing amazingly well! I seriously thought he would be out of it for days but he is alert, moving around, his incisions are looking good, and I'm excited about it.

We got a couple donations so thank you - you know who you are! We are so grateful! Please consider donating to help Christian and his friends participate in their first race!

Donate here:
http://www.active.com/donate/myteamtriumph/christiansjourney

Happy Blending!

In one week.

So remember me talking about the VNS implant?

And remember me mentioning that Christian will be having surgery to implant the VNS for seizure control?

Well, that surgery is a week from today! It snuck up on us just like his third birthday and just like the first day of preschool.

But, also remember how I said I wasn't scared? Well, I'm not scared...just a little nervous.

I've discussed it with myself a dozen times:

What if it makes things worse?
Should we really be doing this?
What if there are complications? What if he's in pain?
Will this be too much for him?
What if it doesn't do anything? We've been through that before but is putting him through surgery worth it?
Will this make things better?

And this track just repeats over and over again in my head. On his best days I wonder why we're doing this. But on his worst days, when he cries all day, I think we should have done it yesterday.

The truth is that I'm used to his seizures. They're small and short. They've changed over time and we've learned to live with them. And I think they may have brought on his smiles.

There is a period of time after Christian wakes up where he has seizure activity. He used to have a continuous and rhythmic jerking that would occur in clusters over the span of 30 minutes. (No, it wasn't a 30 minute seizure.) Waking and falling asleep are times where a lot of seizure activity can occur in kids with epilepsy. That's why when children go in for EEG's, sometimes they are required to be deprived of sleep. I guess that's when the seizure party starts.

Anyway, during this post sleeping period Christian used to jerk with his head and eyes to the right. It was suttle and rythmic, one at a time. Then after the 30 minute period, he'd snap out of it and it was back to regular Christian. This period has changed over time and weaning of seizure meds. At one time it was extremely physical with his arm jerking him over, almost knocking him off the couch. And at some points this period has subsided and gone away completely. Right now, it's not as long a period. It only lasts about 10 minutes. But now it's the BEST 10 minutes of our day.

Instead of jerking, he smiles. It coincides with this time and I'm pretty certain it's related to seizure activity but I don't care. I'll take this over nothing. It's a little desperate, yes, but when given the choice between  no smiles and smile seizures, is it really a choice?

Below is a video of what this looks like. And if you listen very carefully over Dr. Phil blaring from the TV and me trying to coax Christian to smile (because he will respond to stimulation by smiling even during this seizure period), you can actually hear him make a sound while he does this that sounds like it could maybe be a little happy sound.

Make a video - it's fun, easy and free!
www.onetruemedia.com

And then after the 10 minute period is over, it's over. He won't react the same way, in fact he gets pretty mad if I tickle him and yells at me. It's over until next time he wakes up.

I know the VNS surgery is supposed to take seizures away. But if this is Christian's version of smiling...and it has to be accompanied by a seizure...what if VNS takes it away? I don't want it to go away.

One week.

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 sits...in punishment.

Year three has commenced. Ready to jump?

6.30.11 (It happened.)

6.30.11
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 then...it 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.

Feeding Him

I will readily admit that tube feeding is one of the subjects I know the least about.

When we left the hospital after Christian first had his feeding tube placed, we were just struggling to keep food in him. Nobody ever sat me down and instructed me on how exactly a feeding pump worked. They just sent us home and let us fly. I didn't even know what a bolus was or how to do it. I didn't know (and still kind of don't) about gravity feeds and I have no idea what three quarters of the functions on the feeding pump do. Up until recently, I didn't even know what the measurements on his Mic-key button meant.

What I do know is that as soon as formula was introduced in large quantities to my previously exclusively breastfed child, he threw up. And he threw up a lot. We had issues right away. In fact, Christian threw up every day, sometimes multiple times a day, for about eleven straight months. Over the last almost two years, we've fiddled and fumbled with rates and volumes until he wasn't throwing up as much. We also discovered Renitadine, an acid reflux medication that made a huge difference and pretty much stopped the vomiting right away for the most part. We still had spit ups but nothing near the projectile - four extra changes of clothes a day - kind of stuff.

I think it's fair to say that I've been half way winging it the entire time and any advise given on the subject I cling to, but, honestly, it's like someone speaking foreign language to me. I've been briefly instructed in it, I know it's important, but I vaguely understand it.

I had heard the phrase "blended diet" thrown around a couple times. And it really scared me. It sounded out of the question, unreachable, just too much to add to load.

But I always wondered - What would I feed him if he was just a normal three year old? Why can't I feed him that?

After our keto experience, the mixing, measuring, and weighing, I started thinking more about my son's diet. And again - why couldn't I just feed him what I was feeding Lola? Only blended and through a tube?

So I really wanted to make plans to start adding whole foods to Christian's diet after we were comfortably weaned off keto.

And you know things can never get complacent or boring around here, right?

I made the first blend and it was...dare I say...exciting? Yes! It's been exciting! And I thought it was going to be more difficult and more time consuming and it's turned out to be the opposite. It's actually fun to put meals together - I've added cheerios, mac and cheese...things I would feed him anyway.

Now just to throw another wrench into things, right before we tried blended food, Christian started throwing up again for no apparent reason. Couldn't figure it out. And, frankly, I was tired of figuring things out. So I gave him real food in a blender to see if he would hold it down because everything was coming up. And you know what - he did.

We've been taking it slow and we're still in transition but I really hope it works out. I feel more like I'm feeding my three year old rather than plugging him into his pump and walking away. I can't explain the feeling of finding a way to be his mommy that feels more natural and instinctive.

So far, I'm not-so-secretly loving this.

And I'm loving this...

 ...and this...

 ...and this...

 ...and this...

...and this...

 And this one, too!