School issues...

Nathan was just about to be released from the hospital and Em needed to be picked up from school. I wanted to go get her because I wanted to talk to his teachers. I was on day 2 without a shower, I looked a mess and had smudges of mascara under my eyes. At least I had brushed my teeth though!

So, I get to the doorway of Nathan's class (with Colby and Avery in tow) and his teacher and the 3 aides just looked at me with looks of total surprise on their faces. I asked if she (Mrs. L, head teacher) if she had a few minute to talk to me. She said yes and walked over to me. I said I had a lot of concerns with Nathan and that school was going very poorly for him. She said, "yes, well we're about to call a meeting to discuss this. We have a lot of concerns about him too. His behavior is out of control and it's just not working for us either".

Nice, huh?

She said they were discussing transferring him to the "behavior room". They wanted to do it the very next day, if possible. I wasn't so sure about it, but got the distinct impression Mrs. L did not want him back in her classroom. I point blank asked her if I should keep him home. I guess she realized that she couldn't tell me to but her answer, no, her body language and her tone suggested that bringing him back was not going to fly with her. Well, fine with me. I did not want to bring him back to people who were obviously frustrated and not-educationally equipt to handle him.

I won't deny it, Nathan has significant behavior issues. He bites, scratches, pinches, yells and runs away. He does any number of those things when he's forced to do something he doesn't want to do. That's a problem. But, there ARE educators who know how to deal with children like him. Clearly though, Mrs.L and her aides are not those educators.

Another thing I found out yesterday was that the room Nathan was in was for kids who have issues like mental retardation and are low functioning. Now, Nathan's got cognitive issues, no doubt. But, he was the highest functioning of the group and most of the kids were non-verbal. So, this was by far the wrong room choice for him.

Anyway, so we went to talk to the principal -- who is probably the greatest principal I've ever met. Of course, he's the only one I've met as an adult, lol, but I have a great deal of respect for him now. He listened to my concerns, offered suggestions and let me know what had been going on on their end. And, took my questions and concerns to the head of special ed for our district. Turns out, they've been doing quite a bit of evals and observations on Nathan over the past 2 weeks. That kind of pisses me off. I feel like they were gathering ammunition against him and without my knowledge. I would like to see the reports they generated on him. I would have liked to have been part of the conversations they had about him. At any rate, I am so glad I sort of trumped them and brought the issue to the forefront.

I told the principal that I thought perhaps he was emotionally immature, that going back to preschool was an option. I learned that Emily was spending her recesses trying to "take care" of Nathan, get him to play or stop whatever distructive behavior he was doing. That made me cry. Its not her responsibility to do that. Yes, as a twin, I'm sure she'll always do it, but he isn't seeking her out. He doesn't look for her or go to her. I have learned very quickly that I have not been treating them as individuals. I made the decision to move Em to this school to be with Nathan when he's not interacting with her. Instead, she's not riding the bus with her neighborhood friends, not going to school with them and not growing up with them. So, I requested Emily be moved back to our home school asap.

When I left, the principal said he'd discuss my concerns with the super intendent and would call me to discuss them. In the mean time, they would transfer him to the behavior room in their school.

Well, as I got home and thought about it, that just pissed me off more. I didn't want Nathan transferred all around and put where ever they had a spot because they "couldn't handle him". I wanted him in the best room that will address his needs. Regardless of the school its in. And when the principal called me this morning to discuss it, I let him know that Nathan would NOT be back in school until we find the most appropriate room for him. I wanted to observe whatever rooms they had. They are the experts in education... I am the expert on Nathan. Collectively we could make a decision on where the best place for him is. But, I was pretty emphatic that I didn't care which school it was in, that we needed to look at every school. I would transfer him ONCE, so they'd better get it right this time. (I was much more P.C. than that, but that was the message I was sending).

So, turns out they have a behavior room at our home school too. And, I can go observe that room tomorrow. Ok, thats great, but the idea of the behavior room isn't sounding very good to me. I decided to call the Behavior Specialist, who oversees all the teachers and aides for the behavior rooms. I imagine she and I will work very closely over this next year.

Turns out she has a daughter with a seizure disorder as well. Granted, they're having success with meds... but still, I believe she understands a lot of where we're coming from becuase of her daughter.

She said she'd done some observations on Nathan and tried to do an eval. She said, "in the short time I tried to evaluate him, he bit and pinched me several times". Great. Just what I wanted to hear. But wait... it gets better... I said I thought he might benefit from going back to preschool but the principal mentioned that he'd be with 3 and 4 year olds who would pick up on his behaviors. I said, what about the 5th graders in the behavior room? I don't want him picking up their behaviors. She said, "quite frankly, the behavior issues don't get any worse than what Nathan's currently exhibiting".

Oh joyous words to hear.

Ok, I get it. Yes, he's a handful. But, he's got some serious overridding medical issues. We know for certain that he's having multiple seizures a day. Both clinical and sub-clinical sz's. We know that AED's bring out behavior issues in children. She said in her experience, she's not seen a child on an AED that didn't have some sort of behavior issue. We also know that he's on a very strict diet thats causing irritability. And further still, we know that he's having huge expressive and receptive language delays. He can't communicate his wants, needs OR frustrations. Yet he watches his twin do whatever she sets her mind out to do - without effort.

Who WOULDN'T be pissed off as all hell????

But, we have to get his rage under control. We have to teach him ways of expressing himself and we have to teach him appropriate behaviors in school and socially. Yes, I'm in agreement with all of those statements. And we need to do it in the least restrictive environment as possible. That's where it gets tricky.

Their goal is to mainstream him, but if they do it too soon, Nathan will be labeled by his peers and maybe not this year, but by 1st grade, definitely by 2nd grade, their labels will stick with him and haunt him his entire academic career - barring a compete school change. Ok, so just add more finite time lines to our list.

I have to say though, I do feel much better about him going into the behavior room after talking to the behavior specialist. I feel confident that they're committed to making it work for him. I asked what happens if this isn't working? Where do you tranfer him to? What are our options then? Well, this is pretty much the only option. But, she said, they will do whatever it takes to make it work. If they need special training, they get it. If they need another aide, they get it. They will not give up on him until they figure out what he needs. God, I just hope she sticks by her word.

So, tomorrow, I go up to our home school and get acquainted with the teachers and therapists. Emily will ride the bus with the neighborhood kids and Nathan will most likely ride the short bus. I'm contemplating transporting him myself. It's just up the street and would work fine with my schedule. Sigh... not sure yet.

I pray they can get through to him, get past his frustrations and anger. I feel like Mrs. L and her aides never got to know the real Nathan. He is very loving and gentle, can be I mean. He IS a good boy. And deep down I believe he wants to be "normal". He just doesn't know how and is frustrated as all hell. I'm thankful we're goign to a new school if only so that the teachers there don't have a preconceived notion of who Nathan is -- or heard horror stories of this terrible child. Oh hell, who knows. Word travels fast in that community. They may already have ideas anyway, or noted the hell out of his file. At least I won't have to see those damn teachers anymore and hopefully the total change of venue will give nathan a fresh start in his own mind too.

We've begun the med increase. Garry said he saw minimal sz's today. I'm not impressed. We have had a "honeymoon phase" with everything we've tried. I need about 2 months of something working before I'll even think about getting excited.

What a fucking week this has been.

I feel like Nathan was just dx'd all over again...

And, well, I guess technically he was. RE-diagnosed, but I'm finding myself back in that place I was June 10th, 2005. I have spent the last year+ researching everything I could find on complex partial sz's. And after all that time and energy, I'm clueless. I know nothing about tonic seizures. And, tonight after doing some research, I found that what I thought I knew was wrong.

Maybe it's a control thing on my part. But, I feel like I DO have some control over Nathan's health condition if I know all about it. Or maybe it's just that I know what to expect when I have a good grasp of it.

I'm completely in the dark again. Totally flying blind. Anything could come out of left field and it would absolutely blind-side me

And yet, without even knowing the scope of his dx now, I'm finding myself doubting it -- or perhaps questioning it is a better way to phrase it. How do they know they got it right THIS time??? I read up on tonic sz's and it doesn't quite sound like Nathan. JME sounds like him (juvenile myoclonic epilepsy). Coincidentally, I asked my cousin, the neuro about it right after Nate was dx'd. Oh no way he said. It's got a distinct EEG pattern. No chance of that at all.

Well.... I wouldn't say no chance anymore. Something to ask the neuro about.

They dx with a combo of two things: parent descriptions and EEG patterns. Everyone thought Nathan had complex partials because as the neuro today said, "if you are just looking at him during a sz, his left arm is the one affected. That's classic complex partials". Viewing the EEG's they can see his entire brain is showing electrical activity but the video tape of him is clearly showing only his left arm going. So, I'm not upset at the dr's for mis-diagnosing him. Well, except that he just had an EEG done, when... maybe a little more than a few months ago??? Why didn't they see it then? Or didn't they evaluate it since a dx had already been given? And then if they didn't evalutate it, what's the fucking point of putting him through that ordeal???

I don't get it. Unless, his sz's truly are evolving, and so recently so that the previous EEG's wouldn't have shown this distinct pattern anyway?

And, does it matter when or why? Gosh, that's a recurring theme with me. WHY, WHY, WHY???? I am forever wanting to know why.

How am I supposed to do this?

My parents for Christmas "gave" all of us kids a trip to Mexico. We're all going, me, garry, my sister, her husband, my other sister, my step-sister and her husband and my step-brother. Oh, and my parents too.

I asked a good friend of mine if she'd watch my kids for me while we're gone. She homeschools her 10 and 14 year old daughters and they're great kids. I'm not worried about them. I'm worried about Nathan. He is supposed to take his afternoon dose of meds at 130pm during school. He has yet to take them from the nurse. Every day he flat out refuses so every day Garry has to give him that dose at 3pm when he picks him up.

Nathan takes 2 meds in the morning plus 3 supplements that get mixed into his drink, a multi-vitamin, b-12, and 3 homeopathic supplements. The afternoon, he just gets 1 med, 1 supplement. In the evening, he gets the same as the morning, plus omega-3 as well. It's quite a routine we've developed. I'm not worried about MK figuring it out. I'm just worried about him fighting her on it. Hell, he fights US on it half the time.

He's got to eat first thing in the morning or all hell breaks loose. Then you can't get him to do anything.

Perhaps I'm projecting. I can't get this panic feeling out of my gut. I am imagining him completely melting down while I'm out of the country. And for a week. It would be one thing if it were for a day or even a weekend. But a full 7 days.

I can't relax about it now. How can I relax while I'm there? Nathan is on my mind all the time. Yes, I worry about the others, but not in the way I worry about him. Doesn't mean I love him more or less than the others. My sister got on me one night about how I treat him differently than Emily. I discipline him differently. She said, "you treat him like he's a cracked egg". Well, hell yes I do. His IS a cracked egg. Maybe not forever, God I hope not forever. But, for today, yes he is very fragile. I can't treat him the same way, he doesn't function cognitively the same way as Emily.

I just don't know what to do. Honestly, I wish I wasn't going. Or at least not right now. Or, not with the entire family. I feel awful leaving him. And I can't get this worried feeling to go away.

I'm sure it'll all be fine. Now if I can just convince myself maybe I'll be able to sleep tonight.

All about perspectives I guess...

I clearly remember the nurses wheeling Nathan out of the OR and seeing his incisions for the first time. It was hard to take. But, I quickly got used to it - to the point where it would almost offend me when I'd see people doing a double-take at him when they'd catch a glimpse of his scars. Granted, he had no bandages on it and there was tape residue around it as well as stains on his surrounding skin from the antiseptic they washed him with. So, yeah, I guess I can see where people would look twice. Still bothered me though.

Well, we're 2 months post-op. I think his incisions are healing very nicely. I don't like how the loops stick out on his neck though. The wires from the device are attached at his neck and to prevent them from pulling too tightly in the event he were to ever have a grand mal, they loop the wires. Ok, I get that. But, the way they stick out just calls attention to an area that is already obvious. I hope as he grows his neck thickens out so that those loops are less evident. Kids can be cruel.

I debated posting this pic... for quite a while actually. This "journal" is more for my sanity and so that I don't unload on my friends all day long. I've never been the jouraling type of person but I type much faster than I write, so this seems to work for me. And, not only is this a place for me to vent, it's also a way for me to chronicle this fight. To remind me of where we've been and hopefully how far we've come. By the grace of God, I will re-read in a year what I've written this month and we'll be light years ahead. In a years time, his scars might be barely visible. Or maybe just not visible to me anymore. And, I'm proud of Nathan and how much he's endured, how much of a fighter he is. I pray we find our way out of here. Can you imagine the compassionate and sensitive man he's going to be when he grows up?

Life is just a series of battles...

Emily had torticollis when she was a baby. She wasn't dx'd until she was 6 or 7 months old. We had no idea. Well, looking back at her baby pics I have no idea how we didn't know - -her head totally tilted to the right. But she was our baby, perfect in every way and why would we have thought any different? (She still is perfect, so is Nathan, but that's not my point).

Avery has been evaluated for PT issues since she was 8 mos old. Thankfully, she's never qualified. She truly is just my petite little flower choosing to do things on her own time table - but not for lack of ability. Scared the shit out of me regardless when at 8 mos was still refusing to sit up on her own. But, that's Avery.

Colby... I have no idea what his battle will be. But, I'm sure he'll have one. We all have one.

And, during the storm, it's devastating, emotionally draining and overwhelming as a parent. Each time one of my babies hurts, I hurt. Somehow, you always get through each obstacle and look back with amazement when you all of a sudden realize the magnitude of the battle you were in and how life just moved on and you are through it -- and survived! And, somehow they don't seem as profound looking back on them as they did at the time.

I can only hope that is what we feel when we finally win this battle we're in right now. I try to remind myself that "this is just Nathan's battle, his turn". We KNOW what his issue is. Emily had hers, Avery had hers. Colby will I'm sure have his. We all have battles we must fight during our lives. Some are minor. Some are only minor after the fact. But, no one gets through without battles.

1 step forward, 2 steps back...

Ask and you shall receive...

I was in the shower Saturday afternoon (the day after my big whiny post below) and Nathan came in the bathroom, knocked on the shower door and announced that he was going to go poo.

I peeked out of the shower and saw him sitting on the potty, legs just swinging back and forth, lol... and then he yelled, "MOM LOOK WHAT I DID!!!"

Yes, he'd pooped. This makes twice in a week and a half.

I'd call that a sign, right?

I decided to add in b12 and magnesium to Nathan's cocktail of supplements. Methyl b12 injections are used on kids with autism. It helps with cognition, language skills and irratibility. We could use help in all of those areas also. So, I thought it couldn't hurt if we tried just regular old b12. The magnesium can help with sz's also.

We'll see.

He's still having probably 1-2 mildly significant sz's a day. By mildly significant, I mean, they definitely would turn into big ones if the VNS wasn't in place. He's out of it way more so that just an "arm throw". We're seeing some clustering of arm throws normally in the morning still as well. And a random simple partial here and there. I'm stumped. Perhaps the VNS isn't at the right setting yet. We're in heavy ketosis all the time now and pushing the fat to keep him there. 10-15 carbs max a day. I don't see how we could tweak that any more. G and I are beginning to wonder if the diet is all that it's cracked up to be. Nathan's tolerating it still.... so I guess the jury's still out on that. The VNS can take up to 1 year to tweak just right. I would like to get more aggressive with the homeopathic treatments but the chiro said if you go too aggressively, you stir up adverse reactions you don't want.

I think patience is a huge lesson I must learn.

Nathan goes in the hospital next Tuesday. He's getting an MRI first thing Tuesday AM. I've requested (numerous times) that they hook the electrodes for his EEG while he's out. He has to be sedated for the MRI as it takes about 45 minutes and you have to lay still. No 5 year old can do that. Then, it's time to get comfy for the next 3-4 days for an EEG. Not sure why it's so long this time. But, getting all 22 electrodes attached is not easy for a child who doesn't like his head and neck touched. I hope they allow us to do that. I know it's not painful. But, it's scary for him and sometimes for a child, scary is just as bad as painful. So, if it's all the same to them, I'd rather they hook him up while he's still out.

Nathan is still loosing skills. We had about a week after he came off the topamax where he was getting words back. He hasn't really lost any words but he's losing letters. Nathan used to know every letter of the alphabet, the sound it made and words that started with that letter. For example, the T says "taaa", tree starts with T". We get none of that now.

Letters he doesn't recognize any more: c, g, h, v, q, u, f, i, j

I've begun doing flashcards with him again and reading books he enjoyed when he was 3. He just shuts down and won't participate. He is just too frustrated. I should start earlier in the evening maybe.

Battle is right...

Everything is a battle. The tantruming is about to drive me out of my mind. And who knows what sets him off. Transitions, low blood sugar, hunger, not wanting to do whatever I'm asking him to do... I have no idea. But EVERYTHING results in a tantrum that involves throwing things, hitting, biting, screaming, slamming doors.

I really am at my wits end. Somethings got to give.

I feel like I'm failing him. I find myself screaming at him to calm down and I'm not even calm myself. What kind of example is that?

Is it the transition into school? He had summer programs all summer. He didn't do well in them. He does not want to be touched, he does not want to be made to do anything he doesn't want to do. He wants to be left alone to follow his own schedule.

Ok, but that doesn't work in the real world.

But, whatever we're doing now isn't working either. And somethings got to change. Please God give us a breakthrough. Give me something that tells me we're doing the right things for him. A shred of hope that we're going to get through this part of the battle. Because boy are we battling.

Just your average leisurely day at the pool...

What in the h*ll was I thinking? G is out of town picking up Emily who has been staying with my inlaws for the week. Nathan, Colby and Avery were going a bit stir crazy in the house and I couldn't take watching Spy Kids 2 for a 3rd time. So, I figured since everyone was fed I'd go to the pool. After all, they have this great kiddie pool with fountains and I could watch them all right there.

Well, Colby will NOT sit in the floatie and Avery just wanted to be held. I finally got Nathan to play in the little pool - he kept running off into the big pool. And, granted the big pool has a life guard posted about every10 feet. It's incredible really. Anyway, this really nice couple with 2 young children started talking to me and let c&a play with their pool toys (note to self: NEVER go to the pool without pool toys). So, we're finally settling into a nice little play time and then this little girl comes up to me and says, "Are you his mom?", pointing to Nathan. "Yes", I said. "Well, he squirted me in the face". Great. So, I call Nathan over and tell him to not squirt people in the face. Then this other lady - who was there with her own twins - says to me, in a very snotty, holier than thou way, "actually, he spit in her face".

Well, ok, yes, that's gross and annoying... but he didn't hock a loogie at her, he spit water at her. Yes, I reprimanded him. Yes, I put him in time out. And, yes, I made him go up to the little girl and apologize to her. But, why in the hell do people need to be so damn snotty about it? Snotty and judgemental. I mean, I wanted to tell her to take a look at him. Look at his scars... do you think that maybe, just maybe he's got something else going on with him? Social graces are not Nathan's strong suit and granted all kids can be brats and spit water at other kids and no it's still not acceptable. But, damn lady. Give me a freaking break. She judged my parenting skills and the "brat factor" of my child in about 2.5 seconds. She doesn't have a CLUE what my life is like.

Good news and bad news...

So, we've been having one hell of a time with Nathan lately. The tantrums were getting out of control. I called the neuro today because Nathan had 2 very significant sz's this morning and over the past few days has been clustering a lot - clustering meaning small flickers of sz activity really close together. Another thing that didn't quite sit right with me was that his voice wasn't changing during a discharge so we couldnt' tell when the VNS was going off or if swiping him was working either.

I also called the chiro/naturopath we're working with. We're giving Nathan a homeopathic med to reduce the acidity in his body. Well, ketosis by nature causes your body to be acidic but supposedly a different kind of acid. Either way, this chiro is great and said that he never doubts a mothers intuition. So, we're going to stop giving him those pills until we see him next Tueday. Reason being, we can't get Nathan into heavy ketosis, only moderate. And, I believe we'll get better results if we can get him in heavy ketosis -- so we're going to test that theory out.

OK, back to Dr. B and the VNS. Turns out that during the diagnostic run on the VNS last Friday, Nathan's devise was inadvertantly shut off. So, he's had NO discharges since last Friday afternoon. Hello foul mood, hello sz's. Since having it turned back on, he's been in a really pretty good mood.

But the best???? I had just finished putting the babies down and came downstairs. When I walked into the kitchen, Nathan called me from around the corner -- he was in the bathroom and had POOPED!!! ALL ON HIS OWN!!!!! I almost started crying I was so proud of him. I gave him an entire cookie (made with almond flour and stevia, lol)

So, the good news is we know for sure that the VNS is working for him. The bad news is we had to go through a week of tantrums that put a 2yo to shame. I'll take it though.

I'm curious now to see if we are actually able to get him into heavy ketosis this week. Hmmm....

We went to the neuro last Friday to increase Nathan's VNS setting. We talked alot about how he's doing... cognitively, emotionally and socially. Dr. B asked me how he's doing now compared to 3 months ago and I sort of just stared at her not quite knowing how to answer. I honestly think I'm just in survival mode each day and to see a difference in him from 3 mos ago or even 6 mos ago is next to impossible. I am so focused on today, right now, this second that I can't remember.

But, I will say this - either his tantrums have gotten worse or we just can't handle them anymore. One minute he's completely fine, the next he's literally throwing things at your head and screaming at you... only to then be completely fine again.

Nathan is doing very well at potty training though. The last 2 mornings he's woken up with a dry pullup - but will pee in it if you don't get him to the potty quickly - and that's usually a feat because until he's eaten in the morning, he's a bear. Well, and he'll usually poop in the morning while still in his pullup. Yesterday, I took him out of his pullup and he didn't poop all day. Today, same thing (so far) and that's not good.

We've been trying to increase his fat intake since he needs that to help keep him in a high state of ketosis. Well, despite all the fat pushing we've done, he's still in moderate ketosis instead of heavy. I'm now wondering if the homeopathic meds we've been giving him to reduce the acidity level in his body isn't being counterproductive there. He needs to be in heavy ketosis I believe.

And, since Friday, he's been having more sz's. More clustering of very small complex partials and a few simple partials - and a few generalized ones that will stop with a swipe of his magnet. Well, this morning he had two generalized sz's that were pretty big ones. He came out of the first one before I could swipe him. Maybe 15 minutes later was the second one. I was coming down the stairs and he was standing beside DH while he was changing one of the babies diapers. I shrieked, "HE'S IN ONE!". DH ran and got the magnet and swiped him, which immediately brought him out, but he was really in one. His face was white and frozen and his eyes were completely dialated. He fell asleep after that one, which is another indicator to me that it was significant. So, he didn't have a very good morning. OH, and another thing. When at his previous setting, his voice would soften and vibrate when the VNS was discharging. But now, at this higher setting, it's not changing at all. I have no idea when it's going off, or if swiping him worked. Its frustrating really.

So, in some ways, I feel like we're back at square 1... maybe square 2 since he is potty training. That's HUGE. Now if we could finally, finally get the sz's under control. I also feel like initially after coming off the topamax, we saw an improvement right away in his word recall those first few weeks. Now, I don't think we've made any progress since then. That's disappointing as well.

Sins of the father...

There is a concept within the Bible, actually in the Bible many times, that the son pays for the sins of his father -- etc. I am certainly not going to argue the validity, or lack of validity, of this point, but only point out that, historically, man has been aware that he might well (or not) pay for the sins of his father. And, I'm going to assume here that God does not discriminate against women on this point...

When I was maybe 18 or 19, I heard of a place in downtown St. Louis that issued "State I.D.'s" and didn't require proof of age. Now, whether or not this place was legitimate, I was issued a "Missouri State ID" that indicated I was over 21. I wanted what every other 18 or 19 year old wanted... easy access to alcohol.

I went to a liquor store not too long after getting this card and tried to buy beer. When I was carded, I handed the clerk my ID. She said she needed to see a drivers license. I said, "Oh I can't get a drivers license, I have epilepsy and I'm not allowed to drive a car".

I scored a 12 pack and a look of sympathy (or was it horror that I was planning on drinking alcohol but wasn't fit to drive - not that drinking and driving go together, but you get the point).

I'm not sure what made me recall that particular memory... and that's the only time I used that excuse as I actually did feel guilty after having said it.

But, now that I my world is what it is, I can't help but feel this sense of responsibility as Nathan is reaping what I sowed.

You'd think I'd have learned by now....

Every damn time I gush about how well Nathan is doing, I invariably jinx us. Nathan woke up this morning in a foul mood, I knew he needed to eat - it's the first thing he's got to do in the morning. Anyway, while cooking his eggs, he had 2 fairly significant sz's -- significant enough that I had to swipe him (his magnet that overrides his VNS and causes it to immediately emit a charge). I will learn not to get too excited about good days.

Of course, now he's here at preschool riding the tricycle around and blowing me a kiss every time he passes my office door.

Sometimes you're the windshield, sometimes you're the bug.

Today was a good day...

It's something. I don't know which yet... I don't CARE which yet. But, something is going on. I'm seeing the spark of my child -- MY child, not the temporary version he's morphed into this last year. We learned a few days ago that with the modified atkins diet for seizure control you have to really push the fats you can't just take away the carb. Your brain is something like 70% fat, no wonder it runs so well on fat, huh? Nice though that the registered dietician we've been working with never mentioned any of this to us. But, I can see now why the ketogenic diet works so well. Fats/proteins/carb are weighed, measured and carefully controlled at every meal. Sometimes, only sometimes, I wish we were doing the keto diet. I think while very strict, there is a certain amount of freedom in that. Freedom, I guess, from having to wonder if we're giving him the right foods or combinations. Freedom from having to worry if we're following the guidelines correctly - because with atkins, our only guideline is, "stay under 10 carbs". Now we're discovering that that's not quite the guideline we need to follow. If you replace the carbs with just protein, you are not going to have much success. In the last 3 days since we've been pushing fat in him - and by fat, I mean heavy whipping cream and the occasional snack of pork rinds - we're seeing the complex partials go back to being very brief moments of activity where as they had begun to generalize again and the simple partials are not happening at all. That is wonderful news.

Then, the now 4 additional supplements we're giving him are already restoring his health. When Nathan was an infant I could always tell when he was about to get sick because the lymph nodes at the base of his skull would get enlarged. But, for about the last 2 years, they've been permanently enlarged. I guess I thought I just didn't know his head or that the shape had changed or something. Well, turns out the lymph nodes had just been perpetually enlarged. NOW we know that it's because his health has been in terrible shape. In just under 2 weeks of being on these supplements which are supposed to be restoring his health, the lymph nodes have almost returned to their normal size.

The best news? He's making strides to potty train. Let me repeat that because it feels so wonderful to say. HE'S MAKING STRIDES TO POTTY TRAIN!!!!!! Maybe it's only once a day, maybe it's as many as 4x a day, but we're getting him saying all on his own that he needs to go potty. No, it's not every time and yes, we still ask him a lot... but I'll take it because he's making strides to potty train. (yes, I needed to say it one more time :-P )

Our epileptologist would say hands down that this is all related to the VNS. I don't regret getting that implanted. We desperately needed to get some type of sz control - and N-O-W. What I regret is not finding this chiropractor a year ago. But, what can you do? Live and learn. Emily, Colby and Avery will benefit immensely as will Garry and me because we will all be healthier because of this journey.

But, do I think it's the VNS? I think it's a combo of everything. The VNS and diet are treating the symptoms and the supplements are treating his body.

And as much as I hate this whole deal, it's not my deal. This is Nathan's journey, his battle, his path, his history. One day he will either have to come to terms with his surgery, what all he's had to endure this last year and what's still to come or he will have peace with his life and the knowledge that everything does happen for a reason. Last year, today, tomorrow is shaping him for the man he will become, hopefully the father he will become. I pray that I am doing right by him.