Teena has been dealing with really bad headaches for the last little while. So, I'll try and give the highlights of the day.

It's not the typical way to start the school year. But how typical of everything that goes on around here. Nate made it safe and sound to Alaska and is having a blast so far. After being up there for a few hours, it was time to be manly and he bought himself a new knife. They made a trip to the chocolate store and are going to spend the night in a hotel and then make there way up to go hiking on a glacier tomorrow. Should be a blast.

Megan and Ben both started their school work this morning. Oh the joy of being back on a routine. They took a trip to McDonalds to play on the toys this morning for recess and spent the much of the day cooking and building menus and doing the initial prep work for the upcoming school year.

Ben is doing about the same. We got a call from Dr. Mark this morning and Ben's dilantin levels are all pretty low. Which is not so bad given that we are not seeing any seizures at this level.

The kids are both off to bed by 8 now. So, Teena and I get a few minutes of quiet to ourselves. Hopefully to put our feet up and watch Masterpiece Mystery or Eureka.

I have strained my eyes, either from too much computer time, or because I skipped my check up this year and need new glasses. Time with tell, but being on the computer really gives me a head ache, so I'm really keeping this short, maybe the next few days while I try and rest my eyes.

Ben is doing well on week three of the Ativan wean. He looks like he's having withdrawl symptoms and is irritable, but so far no seizures, so it's considered a success. 

We got Nate dropped off with my parents and he will be boarding AK Air at 4 AM. He is very excited, and I'm pretty sure he's off to the boy adventure of his life. We had a good send off, and he promised to miss me very day for one minute, so I'm happy.

Megan and Ben are starting unoffical school in the morning. I'm not sure how that will work without my being on the computer much, but we will figure it out.  Ben really needs the schedule, and I think this will be a good time to get him used to it. Megan is really going to have fun with our activities, and she's excited about doing some unusual things. Plus, she loves schedules, too. It will be good for all of us.

teena 

It has been a difficult week with Ben still feeling poorly, and how busy we have been.  I have also been gearing up to get serious about school, and we adopted some tadpoles for a science experiment.   I'm glad this week is over, but feeling anxious about letting Nate take off for AK tomorrow. 11 days is a loooong time!  So I think that has been coloring events for me this past week. It's definitely coloring how consitent I have been about the blog! However, Ben seems to be perking up-right when Dr. Mark said he would. His Ketones are nice and high, and it has been 12 days since his last official seizure. Life is good, really good.

We've been keeping busy-last night I went to my friend Heather's house without my kids and we had coffee and relaxed. (well, I did. Sorry Heather!)  My parents were over for Saturday morning brunch and Dave got invited on a biking trip. I am currently lazing about the house and decided to blog so I would remember today. Seriously-it's been a long week. Heather said it was like a sitcom episode, so there you go. Tomorrow we have church and after dinner we take Nate to my parent's and send him off to AK.  I'm trying to plan fun things for Megan and Ben while he's gone. Ben is already upset that his Nate is leaving again, and these days he hates to be left behind. Megan is a bit irked that it's not her turn to go to AK. So we'll try and have some fun playdates and events so the time passes quickly. Me?  well, I'm also irked that it is not my turn to go to AK.  And I also need the time to pass quickly, especially since the word "BEAR" came up in the conversation about the hunting trip.  I can't decide which is worse-actively looking for bears to shoot, or not looking for them. Either way, all I can think about is BEARS.

Teena

Aside from getting everyone up at the crack of dawn and having cranky kids all day, the hematology appt went well. I'll try to sum up. Ben has no unusual blood disorders. He has a combination of low white cells and platelets because of both the ketogenic diet and AED's. This occurs in one third of kids on Keto, and Ben is one of the lucky ones. :(  His clotting factors are all good, which was the main concern in case he was ever in an accident or needed surgery while on the diet. But he's fine. He will just bruise bigger and more often than before.  Bummer, but not worth taking him off the diet for. I am totally, completely, and in all other ways, relieved. Hematology Clinic is not a place for children, or anyone else. 

Because Ben does have a virus, we had to be in isolation while in the clinic. This actually worked in our favor-they put us straight into a room so Ben's germs couldn't spread to all those kids who already have compromised immune systems.  Since he touches EVERYTHING, this was very likely.

We had a rough rest of the day. Things just didn't come together.  We were all tired and grumpy. The kids are all off to bed early. Tomorrow we will be getting Nate ready for his trip to Alaska on Sunday. He grew so much over the summer, none of his winter clothes fit anymore. So we are off to shop, and hopefully loaf about and regroup.

I have decided at last how to handle school. Megan, Ben and I will start on Monday. Since Nate will be learning mulitple survival skills while under the tutleage of my AK brother (hunting, camping, fire lighting, whatever other outdoor skill Tory decides a growing boy should know. Wish I was going!) I decide we would do a unit here at home about home-ec skills. We'll practice cooking and menu planning, maybe even try cooking over the fire. Yes, this is all very gender specific. But I'll probably just do it the other way 'round when Meg goes to AK in a couple of years. Then Troy can teach her to bait a hook (I've done it, but it's gross) and I can teach Nate to make a mean gluten free pancake.  While all of this is going on, I will get Ben used to a schedule and get his program up and running with fewer distractions than if I was trying to do formal lessons with the other kids as well. I think this will be fairly stress free (she said naively).

Teena

but I must not have saved it, because it's not on here. Oh well.

I have a nasty headache, so I will try and be brief tonight.  We have seen lots of people in the last couple of days, and I have been busy with some back to school cleaning so I can try and be ahead of the mess.  Yesterday my sister in law and three of her kids came over. We do field trips together, and we got a plan made for the coming year. Teh night before my friend Kim came over, and helped me clean up the mess from the collapsing shelf. This was really great because A. I really dont' see Kim enough and B. I not only cleaned up the mess, but I got an idea of what sort of supplies I still need purchase to be ready for school.(Thank you, Thank you, Thank you Kim! you have no idea how much that helped!) Today my good friend Erica came over with her four kids.  She took Nate and Meg to the library while Ben and I did the windows here at home. Ben was not happy to be left behind, and I'm hoping that before too much time passes, he will be able to spend some time in quiet places like libraries and church.

Tonight I took Nate and one of his friends from church to the last Youth Group party of the summer....in Fall City. A mere hour and a half later, we got home. The other parents have to bring the kids home.  While on the way, Dr. Mark called. Ben's test results are consistent with viral infection.  His Dilantin level is only 11, which is still low. I am considerably relieved. Mark is concerned about hydration to the point of considering putting Ben on an IV, but opted not to.  He anticipates Ben will be better in about four days.  He is also planning to do some research on Ben's issue with low blood sugar, because it is still low. He's going to look back through all of Ben's test results ( that's a lot of looking!) and see if he can find a pattern. We are still waiting for further tests to come back.

Hematology clinic called today and had a wonderful deal for me-I could bring Ben in tomorrow, or November. *sigh* Ben and I will be there by 8:40 AM for blood work and a consult. In fact, we all will be there except David. After the appointment I am meeting my friend Rhonda at the park by the zoo. She is passing through town and we haven't seen each other in 4-5 years, so we hate to miss the opportunity. The bummer for me is because there is blood work involved, Ben has to fast breakfast and meds. So I have to pack his breakfast, snack, lunch and meds. I'm going to go get that started now so I won't have to do it in the morning.

I guess I wasn't brief after all. I try, I really do. I just have so many words!

Teena

Dr. Mark sees evidence of a viral infection. Ben has irritation, though no infection, in both ears and his nose. It's possible that drainage is causing the diarrhea. Ben is also running a low-grade fever.  All this being said, neither Dr. Mark, nor I, nor ultimately Children's, are entirely satisfied with that diagnosis.  Ben will be having some bloodwork done to look for the virus, and also take a look at his medication levels. It has to be tomorrow because you need a 12 hour fast and the levels need to drop to their baseline. Children's Hospital was very happy with Dr. Mark's plan.  Dr. Mark has been educating himself since our last toxicity experience, and does not see consistent symptoms with any of Ben's meds. Children's Hospital thinks it very unlikely  to be toxicity since Ben's level was so low the last time he had it checked. However, once again, we all know we are dealing with Ben the Enigma, so tomorrow's bloodwork will be extensive...just to make sure.

Ben is up and around and playing this afternoon, though more subdued than usual. That makes ME feel better, anyway.  Dave and I have given ourselves permission to hold a dose of meds if we feel the situation is getting out of control again. Now we just wait and see what tomorrow holds.

Teena

Last night's ramble was a result of nerves, which are only getting worse today. We now have an excessively sleepy Ben alseep on the couch for the last two hours. Dave pointed out that we are at the end of the bottle of Dilantin, and here's Ben again with an upset stomach and excessive sleepiness...just like when he was toxic before. We are going to see Dr. Mark at 12:30 to rule out other causes, and I have a call in now to neurology. As the day goes on, I am more convinced that David is right and Ben is once again toxic. I started noticing yesterday that he was falling down a lot....I've no idea what we are going to do, but obviously we can't keep letting this happen. I'm feeling rather upset that poor Ben is sick again. I hate that the cure is causing him to suffer.  I hate that we have to be so often in crisis. I keep thinking we will get used to it, but we don't.  I'm sitting here thinking of all the plans I had for today and tomorrow, and I will most likely be sitting with Ben while he's sick. I'm really hoping he won't end up in the emergency room.  Did I mention yesterday that I like schedules?  BAH!  Ok. well, we'll go see Dr. Mark, and then I guess depending on what he says, I will put in a call to on-call neurology since I highly doubt the nurses will get back to me early in the day on a Monday, and I need to know what to do before Ben's 2:00 dose.

Oh, as to the end of the bottle (technical term at Children's-end of the bottle-itis). Because Ben's Dilantin dose changes so often, it is easier and supposed to be more exact to use a liquid form so you're not chopping pills into tiny, imprecise pieces. What happens is the Dilantin settles to the bottom of the bottle, making the bottom doses more concentrated than the top. We have been rotating the bottle and shaking it into a foam since our last experience, so if he's toxic I don't know how it has happened.  I'll post more when we know what's going on.