Today it is me who can barely sit still. Tomorrow it will be Ben. In the meantime, I am using this stress energy to get packed and get housework done.  I’m going to run out of housework really soon…OK, that’s not true. But stress energy will only take me so far, lol.

Ben had a slightly better night last night. It was not great, but certainly better than the night before. I was just reading through the terms of this EEG, and it says parents are responsible to record seizures. How does that work when Ben’s occur at night, when I will in theory be sleeping? huh. Well, I never sleep well in the hospital anyway.   Have I mentioned how nervous I am about this, and how desperately I wish it were over? No? Well, I wish it were over, and it was a rousing success.

FYI-I will not be able to post until at least Thursday-I’m not allowed to leave the room except to eat.  Also, the results won’t be in for at least two weeks. There’s a lot of build up for a whole lot of waiting.

I’m going to go look for my perspective now.

Teena

OK, well, we still need prayer. Instead of finding perspective, we found out our new insurance is going to cost almost double our mortgage. uh, yeah, can't really afford that. There are a couple of options, but we also are concerned about major issues with pre-existing conditions...very expensive pre-existing conditions.  There was a misunderstanding that has brought about the current  stress, so we have a little bit of time to work this out... but not much. We could really use some prayer in terms of wisdom. Going without insurance is simply not an option, at least for Ben.

All is not entirely well here. Ben had a really rough night last night.  Dave hardly slept, which did not make for a great morning before starting his new job.  I spoke with the dietitian today, and after three trips to various drug stores, I finally found the new Iron supplement. It is blessedly dye free.  We had to start it today instead of the B6 because the dietitian is greatly concerned about Ben’s slowly dropping iron. He’s almost, but not quite, anemic, and we are trying to head that off at the pass. In the meantime, we are hoping the seizure increase is still due to the Red #40.  If nothing else, should the EEG come off, they will have plenty of data to work with.

Dave had a remarkably smooth first day at work.  It looks like the job is going to be a good fit, the commute wasn’t too bad, and he was home in time for dinner. Overall a good day.

I spent the day trying to get ahead.  I ran lots of errands and took Nate and Megan to the dentist(no cavities-yay!) Tomorrow after I take the older kids to HZ and Ben to Jump Planet, I plan to tackle laundry.  I have a strong feeling that after 24+ hours of trying to keep the EEG monitor hooked to a very active Ben, I’m going to be wiped out.  I just keep praying this is going to work out.

Teena

Well, Ben did a little better last night, but not great. Today his behavior was still very odd, so we’re thinking he’s still cycling out the supplement. If he doesn’t get better in the next couple of days, we’ll have to start looking for another reason for the change. I personally want to reduce meds some more, but I suppose it has to wait until after this weeks’ EEG.

Dave and I spent much of today upgrading his wardrobe for his new job tomorrow. He’s fairly nervous because starting something new is always hard, but he’s sort of looking forward to the challenge.  We are all taking a deep breath and preparing for change. YIKES!

Please remember my mom in your prayers. She had a pretty bad fall today, and the result was stitches, a broken nose, and a jammed thumb. She was in good spirits when I spoke with her, but then she was on some pain killers, too.  :)  Pray especially that she can tolerate the pain killers.  Usually they upset her stomach so badly that she can’t use them.

This is a picture of the dancing egg from yesterday’s Women’s Show.  Apparently he had a bad fall…

Teena

Ben did better last night, but so far things are not looking great for tonight, though things may taper off.  He was more normal today, though not back to normal.  We hope tomorrow will be better.

We had a crazy day-Dave was "mom", Megan and I went with my friend Kim and her daughters to the NW Womens' Show. It was a great day-hey we got free massages!  Plus I got to spend some quality time with Meg, a chance I rarely get.  Nate went to a work day with church to help pay for an event he wants to attend next week.  Once we all returned home, Dave's brother and his family came by and we all had dinner together. Crazy day, we are all worn out.

Tomorrow Dave starts to prepare for his new job...

Teena

Ben had a pretty rough night last night. Today he has some new cold symptoms, but I’m also seeing some strange things…toe walking, odd noises, weird jerky behaviors.  I know these signs-Ben is reacting to something he’s sensitive to.  The only new things are the B6 supplement, and the iron supplement.  I’m strongly suspicious of the iron supplement because the outer coating is red. Yep, red.  Most likely red dye #40, which could also explain last night’s seizure increase. Dave and I were thinking we ought to give it a try because we have never definitively proved #40 causes seizures.  Now we will have to pull the supplement and see if Ben gets better.  Of course, it’s the weekend and the dietitian won’t get my email about what we are doing until Monday, but there it is.  They docs made a last minute change to the supplement, I’m not sure why, so that will have to discussed before we make any changes.  GRR to red dye #40-I hate that stuff! 

Ben’s breakfast today-macadamia pancakes and bacon.

Teena

So I finished typing this, talked it over with Dave, and began to write to the dietitian to tell her our suspicions. As I was writing, I realized that I had forgotten to give Ben the B6 for the last three days…thus successfully identifying the iron supplement as the problem. It’s probably the dye. Did I mention I hate that stuff? or that my other kids get home made candy for holidays because I can’t stand to personally give them stuff I consider akin to poison, and that I am thinking about not allowing them to eat it at all, because if it affect Ben this way, what unseen things is it doing to the rest of us….<deep breath> Anyway, I think a little Divine intervention came into play here, and I am very thankful that we know which supplement to drop, and can do so immediately.

Ben had a little bit rougher of a night last night. Today, however, he's been great.  We are seeing so many more words, though his ability to speak clearly has diminished.   I'm dying to reduce more meds, patience not being my strong point, or really any of my points.  Ben is also able to settle down and play by himself for periods of time right now. He is no so hyperactive as we have seen in the past. I am praying and praying that this lull in frantic busyness lasts until after the 24 hr EEG. Well, I'm praying it lasts forever, but after the EEG would be good, too.

I'm having my first "home" day in quite a while, and I don't even have a list of phone calls I have to make. The natural result here is that I have totally crashed an burned.  Fortunately it's a quiet day and I'm keeping it that way.  Tomorrow is another story!

Teena

We have good news! Yesterday David got a job offer, and today he accepted. He will start on Monday, working for Verizon in Everett.  It is a contract job, which means it will last 6-12 months, possibly more, possibly less. But for now, it’s a job.  This is going to mean a lot of change for our family. Dave will have a commute, he will have set hours, and working from home will not be an option.  This will obviously be a problem should we have a crisis. We are not yet certain how we will make it work, but I suppose we will one way or another.

The first problem we encounter is Ben’s 24hr EEG next Wednesday.  I’m going to have to go that alone.  I keep praying that Ben is co-operative, and that the time passes quickly. He’s busy enough in the hospital when he’s sick, when he’s well he’ll be nearly impossible. I have already armed myself with numerous books and movies that I hope will keep his interest. 

Yesterday was the official “cream is out of his system” day for Ben. He had one seizure last night, and has been chatting non-stop all day. He seems more alert to me, and he has been making remarks all day about things going on around him. I am cautiously encouraged.  I make a report to the dietitian tomorrow, and it looks like I will be able to tell her good news.  We should also be getting Monday’s fasting lab work back soon which will tell us a little bit more about how he’s doing.

Tonight we attended the Elder’s meeting at our church to be prayed over, specifically for Ben.  Ben climbed right up into Pastor Hutch’s lap and made himself at home.  He’d been a bit of a booger at home, but was very good during the prayer-apparently Hutch has a calming effect on Ben.  ;)  It was a special time, and we all left feeling comforted. Pastor Hutch also has the name of a person he thinks we should call, who may be able to help us in terms of diagnosis.  One never knows, so of course I will be making that call tomorrow.

Oh, I’ve just been reminded.  Dave is packing up his office at Jetstream this week.   We run the blog through the Jetstream server and it will obviously have to be moved now.  I’ve no idea what is going to happen, or when, but if you can’t get to the blog, we are under construction and will get up and running as soon as possible. Sorry, you may just have to call me for a few days. :>)

I took Ben to Jump Planet today while Megan went to TZ, and Nate stayed home, not feeling well. I took some pics and present them for your viewing pleasure.