Archive for October, 2008

It’s Autumn!

Yeah, ok, so I know most of you have already gotten into the whole fall thing, but me? I’m a little slow. For me the season  doesn’t really start until I bake the first pumpkin pies of the year. Since the house has been such a wreck I’ve felt too guilty and overwhelmed to allow myself to do something not necessary… like baking.

This week, though, I busted my little big bohinekeyus getting the house clean by today (Friday). Couple of reasons for the deadline. First because a very good friend of mine mentioned she might come over today and help me brainstorm wonderful ways of ‘fixin’ up’ my place a little in time for the holidays. I used her. I admit it. I have no shame. I TOTALLY used her to keep me accountable! lol

So, here I sit Friday morning at 9:30am in a clean house (well, mostly… the floors need mopping and I didn’t touch the pantry), with the first two pumpkin pies of the season baking in the oven. =)

The second reason for working so hard to have the place cleaned up was because the kids are desperately wanting my friend’s daughter to come stay the night. There is no way in the world I would allow someone else’s kids to stay over here if the place wasn’t clean. I mean, seriously!

So the kids worked on their room and I took the rest of the house. Granted Matthew delayed and delayed and delayed until he was up till 11pm last night and then still had to work some more this morning. He did get it done, though. If her parents are agreeable it looks like the kids’ll have their very first-ever overnight guest! =)

This is more than amazing. It’s God! The kids having friends over has been one of my ultimate goals for YEARS. When my folks were still here that was one of the main things I wished I could change. I knew there were far too many smokers, well and just PEOPLE, really, for anyone to allow their kids even IN the house, let alone stay overnight, and I wanted so badly for the kids to be able to have guests! I hated that they couldn’t, but for the longest there wasn’t anything I could do to change things. I totally thought it was just a pipe dream idea.

Even though my folks and brothers were all moved out a year ago, we still couldn’t have guests. I didn’t get the house presentable at all until probably Feb, and then it didn’t last. I was so sick and so tired by then that I just could not keep up.

Literally only in the last month have I had ANY energy to do anything. Actually, it’s been the last couple of weeks.

There was one other reason for the deadline… to take advantage of the momentary energy. Yeah, momentary. I knew it wouldn’t last because I knew that I’d have to go back on the antibiotic that whoops me so bad. Once that happened, it would be back to bed for me. I figured I’d have 2-3 days after starting it before it caught up to me, and since I had to start it back up Tues…

I have to say… I BARELY made it before my deadline. I was SO exhausted yesterday and ached so bad! I had stragetically planned which rooms to do when, thank goodness! I did my room and the laundry room yesterday, so no real hard scrubbing, mostly just putting things away and sweeping. Whew!

I am not doing much better today. Pain pills got me through yesterday, and I had to start today with a pain pill at 4am! The headache was so bad it woke me up. =(

Oh well.

It’s Autumn and the Holiday Season can start now. I’ve got pies a-bakin’! =)


A busy week’s board.

This is what’s on my chalkboard right now:


living room
fix shirt (Matt)

dishes – III
laundry – III
D – tuna casserole


dining room
iron Matt’s shirt
copy Lyme papers
reorder supplements

laundry – IIII
D – lasagna


sew up slit in skirt
D – beans and cornbread


laundry room
upload pics to puter

See, I’m kinda sorta trying to get my house CLEAN again. I’ve been so sick for so many months the house was REALLY a disaster zone, but praise the Lord I’m feeling better! =) The last two weeks have been wonderful compared to the last year! The doc has been rotating my meds, so I had 2 wks without one of them and that’s what made the difference. It’s a really potent antibiotic and just knocks me flat when I’m on it. Unfortunely I had to start taking it again today… 2wks on, 2wks off.

So I’m trying to get caught up before the med knocks me flat again. lol

Last week I went through every stinkin (figuratively, not literally… they smelled of lavender laundry sheets…mmmm!) piece of clothing the kids own and we weeded a TON of stuff out. The boys things went to a friend of ours, and the girls things are currently boxed up for another friend. There were a few random pieces that wouldn’t work either place because of sizing and those I’ll list on ebay shortly (thus the upload pics to puter on Thurs). After that was done, I took the kids to a local resale shop and we hit pay dirt on things they needed.

Well, actually we hit pay dirt for Meagan. Matthew got quite a few shirts and a really nice corduroy jacket and when we got home I realized he didn’t NEED anymore long sleeve shirts. He now has 3 people’s worth of shirts, I think. *sigh* Meagan scored 2 really nice skirts and a long sleeve dress for church, a totally cute penguin sweater, and several long sleeve tops. I even picked up two tops and a Christmas sweater for myself.

Then the friend of ours who received the boys clothing (for her little boy, one of Matthew’s best buds), brought over several more nice tops and skirts for Meagan. The dressy skirts are all a little big for her yet since they do not have elastic waists, but the denim skirts fit fine.

THEN, I found a ton of clothes in the hall closet that belong to my folks so they got weeded out as well. I also pulled out a huge box and a huge black trash bag full of boys clothing that I had stored to get rid of years ago and never did. Mostly 4T stuff, but there were some 3T, 2T, and even one 18mo piece in there, too. Matthew wears a 7… and he typically changes sizes VERY slowly… so, yeah, they’d been there awhile.

I have another little boy from church in mind for these things if he’s the right size. If not, I’ll list a bunch of it on ebay with the other things. There’s a couple of brand new with tags still on shirts in there. Matthew is so dadgum picky about what he will and won’t wear…

Oh, and the “fix shirt (Matt)” I did yesterday was a really WILD western shirt I made for him. I made a ‘medium’, because that’s what size the pattern said he would be (well really just smaller than a medium, but the ‘small’ would’ve been TOO small). He tried it on and it fit great everywhere except the sleeves which were a good 2″ too short. I had to go back to W@l-M@rt and buy more fabric and made ‘large’ sleeves to put on the ‘medium’ shirt. Crazy!

I’ll post pics of the western shirt for Matt and the cowgirl skirt I made for Meagan awhile back later this week. I’ll get a pic of him in his shirt tomorrow after I iron it, and then upload it with the others for ebay Thursday.

So that’s what I’ve been up to… filling up the board and then marking things off.

I wish it were one thing at a time!

Well it seems the only things I think of to write about when I am able to write are the kids’ behaviors. Oh sure, at night when I’m lying in bed waiting to fall asleep (sometimes for hours!), I think of all kinds of good blog material. Thought-provoking, funny, inspiring, informative, just all kinds of goodies. Trouble is… I’m in bed and the computer is not.

I have been thinking a lot about the kids and their behaviors and emotions the last few weeks because that is the thing we’re currently “working on”. This year has been chock-full of new realizations and discoveries. Not the least of which is that, yes, I truly do have two special needs kids.

Actually this is only just beginning to sink in. I mean, I’ve known for years and years that they each have a handful of medical conditions and various learning differences, but I’ve never thought of them as being “special needs”.

Truth is, though, they are. They both have needs that the majority of kids do NOT have, and so that makes them “special”. Of course, my kids are both pretty special period, but you know what I mean.

I guess you could say I’ve been living in a bubble the last few years. Perhaps the undiagnosed medical/mental/emotional problems *I* had were part of it, but even so the isolation was self-inflicted. I can’t really blame anyone else for it but myself is what I mean.

The isolation from the rest of the world that *I* had (not the kids, they’ve always been ‘socialized’ plenty, *I* just avoided going anywhere or getting involved in anything) kept me from realizing that my kids truly were ‘different’. Sometimes I would forget that not all kids take 4 or 5 prescription meds a day, or that not all girls have to take nightly injections, or that not all kids have to stay far away from all nuts and metal.

To further complicate the matters, the behavior and emotional problems my kids had/have were not unfamiliar to me, so I didn’t recognize them as being ‘odd’. Many of their problems were quite old hat for myself and my family, actually. They did not ‘stick out’ when compared to my younger brothers or myself at comparable ages, so it was not immediately obvious to me or my mother (the only other mom I really had any contact with) that there was something WRONG.

To be sure, I did catch that Meagan had auditory processing and expressive language difficulties early on, because that WAS different. In reading up on those things, I stumbled onto ADHD and read up a bit on that and recognized Meagan in that, as well. Truth be told I recognized myself, too. I remember one book in particular I read that was written by a psychologist or pyschiatrist who had ADHD himself in which he described the way his mind worked…how he thought about multiple things at once and there was never ‘downtime’, etc, that really made me suspect ADHD in myself. It was seriously like this guy had climbed inside my head and written down what he saw. Eerie.

I didn’t really DO anything about the new knowledge, though, outside of trying to manage stuff on my own. Just continued to hide away in the house. Partly because I didn’t know what to do about it, and partly because when I had tried to get Meagan help for the ADD, I ran into brick walls left and right. I figured since we’d been effectively shut down, that was the end of that and so I quit trying. I gave up advocating for the kids’ health at all, really. I adapted my teaching techniques, curriculum, and schedule to fit their needs as best I could and went on.

I still took them to the doc if they were sick, of course, but I absolutely stuck to that. I quit bringing up ‘concerns’ or questions. If their lungs got bad, or their toenail ingrown, I took them in, otherwise I just tried to deal with whatever on my own.

I kept up the endocrinologist appointments, too, for the routine checks of height and bloodwork to manage Meagan’s pituitary dwarfism (growth hormone deficiency), but gave up trying to find a good allergist, audiologist (for auditory processing issues), or neurologist and/or psychologist (for ADD). I did not pursue any of the therapies I thought the kids would benefit from (speech, occupational, physical, auditory re-training). The pediatrician we had was not the least interested in anything outside of the standard runny nose issues and so I quit asking her for anything more either.

So where am I going with all this… everywhere. =) Our new pediatrician is very interested in helping the kids with ANYTHING they might need help with, and I’m beginning to advocate for their health again above and beyond the basic “they have a respiratory infection” kind of way. It’s going to take time, though, since we kinda have a backlog of issues to sort through and deal with.

Some things have been handled or managed relatively well for quite awhile – like both kids’ asthma and enviromental and other allergies, and Meagan’s GHD. Other things I’ve know about but nothing has been done about it.

There’s Meagan’s auditory processing, expressive language, and ADD issues which I’ve had on the backburner for years. There’s Matthew’s small stature (is it a hormone issue like his sister’s??) and his suspected hypotonia (low muscle tone) that has also been in the back of my head for years. Then there’s his extreme behavior problems which have been here for years but I did not realize there was potentially HELP for it.

This year, we’ve added a bunch more. Not that the kids have changed that much in the last year, it’s just that I’ve become more aware that different aspects of their behavior, emotions, and health are NOT normal, after all. That realization has been building for a couple of years as I meet more moms and kids and really started paying attention to them.

So, in the last year I’ve recognized that the kids have a lot more issues that need dealing with than I was aware of all these years. They are not NEW issues, mind you… I just have a new awareness that they have a name and potential for being helped, and in some cases just new awareness that they are not normal.

These would be things like depression in both kids, ADHD in Matthew, wheat and soy allergies for Matthew, the Lyme Disease and other tick-borne infections in both kids, anxiety in Matthew, and nausea and mild anxiety in Meagan (these two are new symptoms this year).

There are a lot of things we need to work on getting taken care of or managed. Some things are already under control, others are on the way, and still others we haven’t even started. It’s the behaviors and emotions that are currently at the top of the list.

One thing at a time, right? =) Except it doesn’t seem to be working out that way.

The one thing for Matthew is actually a two-fer because they are equally urgent. That would be his depression which manifests itself with extreme mood swings, anger, aggression, rage, and frustration… and his ADHD which is much more evident and problematic when the depression is under control.

The one thing for Meagan is her ADD, at her request, but her depression is really causing problems and I’m not sure but what we might have made the wrong choice as to which to address first.

She started Concerta a couple of weeks ago, but when asked if it is helping her concentrate any better at school, she replies “maybe a little” with a grimace and a shrug. I don’t see any improvement at all, myself, but then I don’t see her during the school day when the meds should be at their peak.

At the same time, it’s been more and more evident (because I know what to look for and pay attention to now) in the last couple of weeks that she is, indeed, very chronically depressed. There have been several days when she’s been very emotional, crying over the simplest little things. She’s been just generally sad, blue, and down-in-the-dumps a lot, of course, but there are other things too that I never recognized as being depression before. Things like her repeated ‘episodes’ of “I hate my life. Nobody loves me. I suck at everything. I wish I was never born. I never finish anything.” kind of statements, as well as her frustration with herself (biting her hands, or hitting her head, or squeezing her neck, etc). She’s also often very blah. By that I mean there are lots of times when she is apathetic about everything in general…. emotionless almost.

I do know she is almost 11yo and so you might think that the moodiness and crying is just a little bit of puberty stuff. Early PMS, if you will. Problem is… we have been medically SUPPRESSING puberty for a year now. So it’s NOT puberty.

She has a follow-up for the ADD with the ped Mon, so we’ll see what she thinks then.

With Matthew, it’s even more complicated. He is on anti-depressants, and they have been WONDERFUL for him. All the frustration, anger, aggression, etc was GONE completely. He was HAPPY and obedient and cheerful and pleasant to be around (I’m sad to say that truthfully he has been a VERY hard kid to want to be around for a couple of years… ), and polite to boot. Simply amazing the difference it’s made… He was having fun and enjoying life (for more than a few minutes at a time) again. Until…

Week before last he had a day or two of mild (very!) behavior problems. He was getting upset and angry over stupid stuff again, but it wasn’t a major temper fit like in the past. The first day he told me that his temper control was flashing on and off. It got worse and worse, and by the end of the week it was as if he’d never had the anti-depressants at all. Then, just as sudden it went away and he was back to his new normal this past week. Monday through Thursday, that is. Yesterday -Friday- he was back to the old normal, but with a twist. Every now and then throughout the day, he would get calmed down and be the new normal Matt again for a few minutes. Today he’s doing ok, but not great like he had been.

So this is a problem, of course. I need to talk to the dr and figure out what the deal is. Is the dose too low? Is this particular med no longer going to work for him? Was the mood switch a reaction to switching his antibiotics from one that penetrates the blood brain barrier pretty well to one that doesn’t penetrate as well? Was this even ABnormal? (I have not totally figured out yet what is and is not normal.)

Then there’s the ADHD issue. When the anti-depressants are working and Matt is the ‘new’ Matt, the ADHD is a huge problem… at least at home. It hasn’t interefered with his schoolwork yet, which is why the ped did not put him on meds for it, but it’s becoming more and more troublesome at home.

This last week between Mon and Thurs when he was feeling good/happy, the ADHD was getting him into trouble all the time. The depression symptoms were keeping him in trouble before because of the yelling, screaming, throwing, hitting, slamming, backtalking, rebelling, running off, etc. The ADHD symptoms are getting him into more mischievous kinds of trouble, but still just as potentially dangerous (and maybe in some ways MORE).

In four days he: spray painted and then tore apart a table in the front yard, went dumpster diving in the parking lot behind our house, strung a flourescent light bulb (from the dumpster) between two trees, smashed a bunch of Christmas bulb ornaments all over the ‘floor’ of their ‘clubhouse’ (between the now ‘lit’ trees), took a walk to Braums without getting permission to leave the property, climbed up on the roof several times, spray painted and played with a steak knife pulled from the dumpster, poured red glitter all over EVERYTHING inside and out (another dumpster treasure), and spent about 45min going berserk over making “spider webs” by clapping his glue-covered hands together.

Yes, a lot of these things happened outside, so the first instinct is to say ground him to the inside or don’t let him out unless I go with him and watch him 100% of the time. Thing is, he’s almost 10. The neighborhood kids are all between 9 and 12. They all play together in the neighborhood, visiting each other’s houses and yards. It’s not a big neighborhood, maybe 5 houses long on either side. The kids don’t (typically) leave this small area. They all know the boundaries, and they all have (so far) been really good about staying in them and staying out of trouble without moms breathing down their necks. They aren’t LITTLE kids anymore, ya know?

If he were 4, then yes keeping him inside or going out with him and staying right at his side at all times would work. But at almost 10? Not so much. He is so small compared to the rest of them he already feels like the baby of the bunch. To have his mommy following him around would make things a million times worse.

What gets me is that while the ADHD isn’t NEW, it’s newly WORSE. His doc said that was to be expected, that the depression being treated allowed the ADHD to come to the surface more. I’m having to guess that the anxiety and fear he USED to have was keeping the lack of impulse control (mostly) in check, because he never would have played with a knife before. He would have brought it home to me (very carefully) and ranted and raved about how stupid people were for throwing it away where little kids could find it and get hurt. He would have (and has) done things like spray painting tables, climbing the roof, and scattering glitter everywhere… but in the past it would have been because he was angry about something or someone. It was almost predictable… if he was having a fit we knew to watch out for stuff like that. If he wasn’t actively throwing a fit, he didn’t do things like that. Now he’s doing these kinds of things just because… whenever.

The ADHD symptoms might not be interfering with his schoolwork, but they are definitely making him do things that are potentially dangerous (taking off without telling me where he’s going, climbing the roof, playing with knives)… and that’s a problem. I don’t know whether we need to try meds or if we just need to crack down even harder on the discipline or what. Like I said, I’m having to relearn ‘normal’. A year ago meds would never have been in question, because I was totally unaware that his problems were anything more than just bad parenting on my part or pure willfullness on his part. I didn’t know it COULD be anything else. Now that I know he has neuro-borreliosis, depression, and ADHD? I’m having to re-evaluate everything in terms of what is normal and does this need medication or something else?

Once we get these most pressing things worked out, then I’ll be able to move some of the other issues to the top of the list… hopefully ONE thing at a time.

In the meantime, I guess I need to brush up on my juggling skills. It’s a good thing my Lyme treatment is going so well. I’m ABLE to think again, and I’m gaining more energy and feeling better all the time, and that makes it not simply easier to juggle these things, but POSSIBLE again.

One thing is for sure, life is never boring around here!

My *two* ADD kids

Can’t remember if I mentioned this before or not, so here goes… Meagan is now taking ADD meds. This is something I knew she had difficulties with years ago, but honestly had given up hope of getting meds to help. Our previous pediatrician was basically useless. She managed to make me feel like the worst mother in the world every time we went in for something, and she did keep our asthma and allergy meds refilled for us, but that was about it. They were SEVERAL things over the years that I asked her about or expressed concern over that she… well, she dismissed completely and never even tried to figure out or help with. The ADD she flat out refused. Said we had to see a pyschiatrist. Never mind the fact that absolutely ZERO of the pyschs on our insurance plan would accept new patients. Never mind the fact that I even offered to pay out of pocket for a seperate ADD visit. Flat out refused. Actually she even went so far as to LIE to me about the situation. She told me our insurance would not allow her to diagnose and medicate ADD/ADHD, and that if I paid out of pocket for her to do so, the insurance would cancel us.

So yeah, I’d given up all hope of pharmaceutical help. We quit seeing the behavior modification counselor too, because she said she really couldn’t do anything else to help Meagan until she was on meds. I just tweaked my teaching tactics, curriculum, and ‘school setting’, and continued the homeschooling unaided.

Now? We have a WONDERFUL pediatrician. I truly cannot say enough good about her. I love her to pieces. And so when Meagan caught wind that this doc might be willing to help her concentrate at school, SHE asked if I would make an appointment. So I did. We went and now she’s on meds.

Unfortunately they don’t seem to be doing much good… yet. Since I’m not teaching her anymore, I’m having to rely on her opinion completely. I mean I can’t SEE if she is focusing better or making better use of her time or comprehending what she’s reading better. She’s only taken the meds for a few days, and each time I’ve asked if they’re helping or not she replies with a shrug and a grimace and says “a little?”

I’m not overly worried, though. I feel pretty sure the doc will keep tweaking meds and doses till we find something that works more than a questionable “little”.

Matthew had a not-so-hot week last week. It seems the antibiotic switch provoked another Herxheimer reaction. At least, that’s my best guess. His behavior and moods last week got progressively worse from the Sat before last until the night before last (another Sat since this is Mon…lol). Since he was still taking the antidepressant, and there was VERY definitely something going on… I’m guessing it was a Herx. I think it was last Monday night that he made the comment that his temper control was “flashing on and off”. I suppose it is a good thing that he recognized that things were different and he felt ‘off’?

It’s weird to even say that… he felt ‘not right’. Weird because for years that was his NORMAL. It was his normal until he started the antidepressant. On meds, his PRIOR normal is the ‘not right’. That’s still taking time to sink in. It’s so very cool and such a ginormous blessing in oh-so-many ways, but definitely taking some getting used too. It’s strange… last week he was ‘not right’ and yet it seemed like he was “back to normal”. I don’t think my brain has really processed that his “normal”… his “old self” was NOT normal and is just that… his OLD self.

I’m talking about his Herx reaction in the past tense… last week… because if I refer to it that way it’ll make it true, right? LOL I honestly don’t know if we’ve seen the last of it or not. I think it’s at least on the way out, though. He seemed much more like his NEW self today. He did have a couple of minor outbursts, but definitely better than last week, so I’m really hoping the Herx is dwindling and he’ll be back to the new normal again.

It’s amazing how sweet and responsible and thoughtful and just plain HAPPY the new normal Matt is! SUCH a blessing! I can’t even begin to describe it.

It lets his ADHD show up more, though. That’s not so good. It hasn’t interfered with his schoolwork yet, so no meds, which is nice, but then again maybe not so. See it’s like Meagan got all the AD and D and Matthew got the H. She is far from hyper (now… when she was younger she was very hyper), but has major distractability and attention issues in all areas of life, particularly schoolwork. He, on the other hand, loves the bookwork and reading and so focuses with no problems there, but once he gets home? Oy vey! This new and improved HAPPY Matthew does. not. quit. talking. or moving. EVER. At least it’s a happy, cheerful chatterbox with a motor that never runs down! He has a little of the D for distractibility… ok, a lot really… at home too. As in it takes an hour and a half of me re-directing him to get his pills actually swallowed. Same for shower, chores, etc.

When I took Meagan in for her intitial consult for the ADD, doc mentioned that it looked likely we were going to need to add an antidepressant for her, and we may yet add ADD meds for him. It seems Meagan has been suffering from chronic depression, too. She’s withdrawn a lot, kinda glum, “I don’t care” attitude, very NON-animated (except in certain situations with friends), and has tons of the low self-esteem. Matt has the self-esteem issues, also, but his depression has mostly manifested with irritability, anger, opposition, major behavior problems, etc.

So basically? My kids are more alike than I thought. A lot. They are so very different, and yet… same underlying problems. It’s just that they exhibit the problems in such totally different ways. The depression and ADHD are there in both kids, but manifested very, VERY differently.

In both cases, the depression at least, and maybe even the ADHD, is caused by the borrelia (and probably others) infection having set up shop in their brains and nervous system.

These infections have kept my children and me in the dark as to what ‘normal’ is for many, many years. We’ve been living with a very poor quality of life, that at times we might have been aware wasn’t great, but really we had no idea it was so poor, because we simply didn’t know it COULD be better. It’s all we’ve ever known.


by the grace of God… we are slowly, but surely learning that life can be and will be so very much sweeter. I give thanks to God for that. I thank Him for every little step closer to good health and functioning and stand in utter amazement at how BIG of a difference He’s making in our lives… for the better. Oh for the better!! He’s blessed us so far above and beyond my imaginings! When I commented to my doc that I had 2 days where my knees didn’t hurt until late in the evening, he said that eventually… in time… that’s the way it will be all the time. He said that gradually all my symptoms will decrease until every single day is pain free, balance problems free, confusion free, and I’ll have energy and strength to do stuff. I have a hard time imagining that. Go for weeks, months maybe, without my knees aching or my head hurting or my neck being stiff or getting worn out from chewing?! I said something like “I’m not sure that’s possible”, but my doc was quick to disagree. He was adamant that it WAS possible, and that it would happen.

I’m think I’m beginning to believe him. After all, the Lord led me to him. God is so very, very good!

Another good thing… apparently Matt is not the only one having a Herx reaction lately… my doc said that the reason I’ve been so very exhausted this last month is because I was herxing from the addition of one of my antibiotics. So that one I’m supposed to now ‘pulse’… take for a couple of weeks, then off a couple of weeks. He said that should give me more energy back. And THAT means that maybe I can get some projects done. YIPPEE!! Ok, ok, and some housework. blech!

Moved my blog again…

No real reasons for it. Ok, so maybe there are.

Reason #1: I got all set up to blog several months back and spent a small fortune doing it. I don’t want to have to pay that small fortune again in a few months in order to continue blogging.

Reason #2: The place/way I had been blogging was “outdated” according to WordPress. (See my post about this.) This gets my version of WordPress updated without me having to figure out how to do it. (Because THAT was never gonna happen, folks!)

Reason #3: I finally figured out how to do it! (Move it that is.)

That’s pretty much it. This should be much simpler to keep up with. Simple is good. I like simple, remember? =)

Oh, I also like rearranging things. This would apparently include my blog. ;-)

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October 2008
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