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 It's funny because it almost seems like his old seizures have been replaced by these new tonic-clonic seizures.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

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....

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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 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!



New Neuro.

We have a new neurologist!

There was no official "Will you be our neurologist?" proposal. This particular doctor has seen Christian in the past and remembered him and we've been seeing his colleague, another epileptologist who has been awesome, since Christian's VNS placement for increases. So we weren't exactly new to him.

It went something like this:

Dr. L.: "We can run into some trouble when there are too many neurologists involved..." (Looking through his file)

Me: (Interrupting) "That's why I'd like you to oversee Christian from now on."

Dr. L.: "Okay. Yeah, that's fine."

Me: "Okay."

And the deal was done. All of Christian's records are already in a central system so there are no problems there. The new doctor has access to all of it.

I told him about my philosophy with medication and how I'm not opposed to it, it's just that nothing has worked. He understood and we discussed some future possibilities early next year that we might try. But more to come when the time is right. I need to do some research first.

Dr. L. also increased Christian's VNS strength slightly, scheduled an appointment for February, and commented about Christian's super cool One Fish, Two Fish, Red Fish, Blue Fish Dr. Seuss shirt. He was so excited about the shirt that he stopped everything to show the intern. Oh, and he also taught us both about a reflex in little ones and older people. When you tickle his palm, his chin quivers. No, I didn't know that! Neat!

I was thinking about what my big problem was with the last doctor and what I can do differently in the future after the appointment. Part of me wants my opinion respected and I want to be the final word and have all control over my son. But the other part of me wants the doctor to take some ownership and lead us with suggestions and new ideas. It's been really hard for me to let go and allow that to happen with neurologists. And really, it's a trust issue. I just didn't trust the former neurologist with decisions regarding my son. So I could never really let go a little. Furthermore, I never felt fully trusted by him. I don't think he ever trusted that I would follow his directives. And maybe I wouldn't. No trust. In contrast, I fully trust our pediatrician, and I feel fully trusted by him. I know he respects me as a parent and he's not afraid to offer suggestions, whether I take them or not.

So one of my New Year's resolutions is to work on trusting this doctor and seeing where that takes us.

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.

Equipment Fairy

Christian had a whole week off from school last week so he just hung out with Mom, sister, and big brother all week. He was really relaxed and such a chill-baby that we made day trips to Ross, to the zoo, and to Jamba Juice for a Pumpkin Smash smoothie.

He was good and ready to get back to school this morning after his week break and he'll be starting his preschool transition program where he will go and actually participate with the other preschoolers in music class and circle time. I can't wait to see how he does.

His speech therapist that comes to the house said last week that he was the most alert and attentive she'd ever seen him and tracked from left to right, keeping up with the object almost at the speed she was moving it. Then the OT said that she confirmed with the PT at school that they had both noticed an improvement in Christian's alertness and attention.

Manny and I have both noticed this, too. We had a discussion about it the other day and both agreed that it was a combination of things: The VNS and the blended diet. (If you look to the right I've added a page of Christian's diet and foods we blend and feed him.)

I'm also so excited that the equipment fairy is coming Friday! A few months ago we ordered a new Tomato seating system to replace the plane ol' Tumbleform. We also ordered an adapted swing for outside (or inside) and a new car seat for this growing boy. The best part...insurance covered it all! Some people are blessed with a lot of money at their disposal, some people are blessed with more therapy opportunities, we happen to be blessed in the insurance department. We've never had to fight or appeal for anything (yet). There's no secret. We just submit our requests and see what happens and I never presume we'll get denied. I just presume we'll get the equipment we ask for. It's like throwing it to the wall to see what sticks, which tends to be our way of life when it comes to Christian's journey. It sure does help to have a PT who's a master at writing letters of necessity and a pediatrician that is supportive and experienced in getting all of the requests signed and faxed to the right place in a timely manner. If it seems like I'm tooting our insurance horn, I am. We toot all the horns we can in this business.

I can't wait to see the new goodies for Christian! But it will have to wait until I get back. My near drown moms' retreat in Seattle starts Thursday! I'm so excited and so nervous. Daddy will be home with all the kids all on his own (Lord have mercy on him) and I'll be meeting old friends and new friends, some of which I've met and some of which I've never met in person but have been speaking to online for the past two years! We all walk very similar paths and I'm so humbled and blessed to have this opportunity.

Now, just pray that all of our kids stay well enough for their moms to travel!

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?

She speaks Christian.

We had Christian's IEP meeting yesterday. First it was a meeting to discuss Christian's readiness for preschool, then it turned into an IEP meeting (and, yes, we just had one in June), but then it morphed into an IEP addendum.

Without getting into the fascinating details, the IEP basically puts in writing what the school will do to provide an educational environment for Christian and meet all of his needs.

I hear stories about these meetings, by the way. Bad stories. Headache inducing stories. So there is always a degree of nervousness and dread like someone is going to jump out from behind the wall and scream, "Boo! No school for you!"

That didn't happen. It was actually a really good and productive meeting. I made a point of continuing to encourage myself to be open minded. I didn't want to seem defensive or jaded because Christian's in preschool for God's sake. I'm not sure I've earned the right to be defensive or jaded yet and, no, my friends' and friends of friends' stories don't count.

Anyway, Tuesday morning we had the opportunity to tour the other preschool class. It had a lot more students, but it was in the morning and not in the afternoon. It was loud and boisterous and circle time was all the rage. Christian got to sit in and be included in circle time and there was a moment where I moved across the room so I could see his body and his face - since that's how he speaks - and I was taken a back because he blended in with the rest of the little busy bodies that were his age. For a second he looked like a normal little boy just going to preschool. I'm pretty sure my earth moved a little.

Enough about Mama's proud moment, Christian did great! He was attentive, I caught him looking toward the singing and music, and the loud, crazy chaos of a preschool classroom didn't shake him in the least!

After he completed circle time he went back to his other classroom. I left to run some errands and came back to find him being snuggled by his favorite aide. She said after circle time and more therapy, including paying attention with the vision therapist for forty-five minutes straight, he looked like he needed to be held. She now knows him well.

And after visiting all of the classrooms...again...and thinking about everything and every choice it was apparent he needs both - preschool and downtime.

His therapists, teacher, principal, and vice principal of the school all attended his meeting. Everyone had amazingly wonderful things to say about my boy, including that he was a different child then what was written on paper in the initial assessment reports. The PT and OT both concurred that he's made really great progress, specifically after the VNS was implanted (very interesting!).

My main focus was to keep him in the school he's in now. It was not important that he be going to school with his neighborhood peers. What is important to me is that he continues at his current school with his current therapists and his current amount of therapy. And that is what will happen. We also added that he needs a full time aide at all times no matter what classroom he is in. Seems like that would be a no brainer but I guess we had to prove he needed it? I don't know. But he has one now. I'd love it if he could have the aide that he usually has because she's gotten to know him and care for him so well. But I'm not sure that will happen. :-(

The biggest change will be that he will be doing both programs. This means that he will spend some time in the preschool with the preschool kids and some time in his current class all with the goal that he will eventually make the transition to the preschool full time. He kind of has a custom program of sorts, which is appropriate because Christian is a custom kind of boy.

At this point I'm content in knowing that this group of teachers, therapists, and staff are very dedicated to Christian and his education. I truly believe that all of them care about him and they've done a great job at finding a way to provide Christian with what he needs. We are very blessed to have this team.

Favorite part of the meeting was when the OT was talking about Christian in circle time. She said he was attentive and really listened with his body. Then she said, "Well he wasn't whooping and hollering but...wait a second, he WAS whooping and hollering in the way that he knows how!"

Ahhh, she speaks Christian.

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.