This is good-we're accomplishing our goals with the diet. Getting ketones(measured in urine) early on is a good sign for future sucess.  However, it's not going to be easy. Ben threw up last night, and is lethargic and irritable today. He had several seizures last night, and we had to give him Ativan. Today he took a nap, which triggered more seizures.  David called the neuro, who later called back and asked us to come in tomorrow. Basically, the meds are not working, and he doesn't want to waste any more time.(good) So tomorrow we make a plan, and hopefully I can get some professional help on the diet. Like someone can make menus for me, and help me figure out the allergy issue.

The last couple of days have been long with Ben, tomorrow will be long, and we are finalizing details on the refinance. The stress is running high here. However, it's nice to have my surgery behind me. We could use a little break from the pressure.

Back to the cranky kid-

Teena

I did take a nap today, but got through school with the big kids and OT etc with Ben. I'm sore and feeling excessively tired, but otherwise back at it.  Ben had a fantatsic day today, wonderful speech, amazing eye contact, good attention to lessons, bringing everyone toys and books so we would play with him. It was great! He did have one nasty seizure this afternoon that he really had some trouble recovering from. We have been noticing some odd behavior with breathing today as well, but cannot decide if it's something he's doing along with the hands in the mouth thing, or if this is something we should worry about. To be on the safe side, we have decided to worry.

Today I also met with the accupuncturist at Dr. Marks office who is going to teach me how to do accupressure on Ben. This should help with the standing on the head and the basic hyper behavior.

We spoke with Dr. V today-well his assisstant anyway. D.V is out of town until Wednesday. He'll call us when he gets back, and either want to raise meds again, or have us come in sooner than OCT. 9. We did let them know that we are attempting Atkins with Ben. So we will discuss that at our next visit as well.

Ben has had a funky rash on his face-disappears in the morning but arrives around 6 in the evening. We have several thoughts on what it might be, and keep eliminating suspects, but so far have no luck figuring this out. It's very frustrating, and we need to know in order to be sure it's not a food related thing.

David spoke to the neuro at UW last week, and he gave us some tips and some places to look, but no new information. bummer.

We will just keep on going in these many directions, and hope we find some answers. Hopefully Ben will respond well to the Atkins, and hopefully he can tolerate the food.

thanks for hanging in with us

Teena

The first day is bad, the second day is better, but the third day is always the least fun. You're starting to feel better and you think you should be able to get up and do more normal things, but your body isn't well enough to actually do that. That's how things are today. She's doing better, but isn't back to a place where she can do much for very long yet. So, we're grateful that Julie is still here helping out with things. Megan is still over at the Ryan's, I'm sure having a good time. She'll be back this afternoon.

 Ben had a much better night. He had one short seizure this morning, but that was all and was the best morning he's had in a while. So, we're grateful for that.

Well, Teena's mostly on bedrest today. So, you're stuck with me again.

After getting the percoset, Teena did much better. It took away the pain and helped her to get some rest and spend the rest of the day in bed. Today, she's feeling much better. She was well enough to eat and the pain is lessened enough that she was able to drop the doseage on the meds some. The kids are doing a good job of leaving Teena alone so she can recooperate.

Thank you for your prayers and calls to check on her.

Nate was able to go to the Burgess' yesterday. I was glad that he had a chance to get out of Dodge for a bit and he loves to get to get to go build things with Grant.

Julie is doing a great job picking up the slack taking care of Ben and helping take care of meals and helping out Teena. Thanks Julie!

Nate's game went really well this morning and the boys pulled out a 3-0 victory.

Megan is heading over to the Ryan's this afternoon for a sleepover. Thanks Heather.

Ben had a really rough night last night. He started with a seizure about 6:30 last night where he fell off a chair and things went downhill from there. They started coming pretty fast and close together. After 5 more seizures by 9, we gave the first dose of Ativan. He had another 5 over the next hour and a half when we gave him the second dose of Ativan. That seemed to do the trick and he was able to sleep after that. It was quite an experience. Teena was in the bedroom sleeping while Julie and I sat on the couch comforting Ben.

He woke up this morning to 3 more seizures. He's been pretty good for most of the day, but has had periods of time where he would just cry inconsolably. It's just so sad to watch him and when Teena's out of commission, it is always such a good reminder of how hard her job really is and how mentally tough she is. Teena you're both loved and respected. (I think that should cover my bases, huh Julie?)

Crazy day. It was a moderate morning for Ben. He had 2 seizures before he woke up and then 2 more afterwards. This was the first time we've seen awake seizures in a few days. Someday a positive pattern will emerge and stay.

Deena came over this morning after her shift at the hospital and hung out with us for a bit before she took Teena to the hospital at 9:15. Teena got home about 11, incidentally the same time the appraiser was here for the refi. She was feeling pretty rough and came right in and went right to bed. The surgery went well, but the meds hit her quite a bit harder than was expected. Now, she's hunkered down in her room watching movies waiting to feel like she'll live again. Se hasn't been able to talk much, but when she does, I'll give more of an update.

It's been a big help having Jan there. While she kept track of Ben, I was able to get my work finished and Nate and Megan were able to finish up their school work. So, we would be free this afternoon. Now, she's at home while I'm at the tire store getting the punctured tire fixed (aka replaced because the tire wasn't in decent enough shape to fix...uggh). It's not fun to have to do it, but at least Nate got a chance to change a tire last night. :)

More later.

Ben had three seizures again today, and is very twitchy, we think from raising the meds. Otherwise he is doing great and we are getting lots of talking. We've almost got the Atkins up and running, but will wait to go full time until after I recover from tomorrow's surgery, as many kids get sick the first few days.  Ben LOVES the new diet-all the bacon and eggs he can eat! Fried in grease no less. The other kids are jealous.

I spoke with a neurologist at Johns Hopkins today, and got lost more info on brain surgery and the why's and wherefors. It was  very informatinve, and I feel much more equipped to make such a decision. However, she totally encouraged me to keep on with Atkins, and if that doesn't work, go on to Keto before we try brain surgery.There was lots more to that converstaion, but I have to be brief tonight. More to come.

The neuro from UW called today as well, and I missed that call. I will have to wait until Monday to see what they had to say. It's making me nuts!

Just for perspective-this week I spoke with people from Children's Hospital 2x, Swedish 2x, and Johns' Hopkins 2x, and one message from UW. No wonder I had no time!

It may be all weekend before I can get back to blogging-hopefully Dave will post over the weekend.

Teena

Ben had three very short seizures this morning. We are just happy these days when they stop on their own. He is really cheerful today, and seems to be adjusting ok to the diet changes.  I've got the fats way up, but have not reduced the carbs just yet.  The good news is-he can have hot dogs on Atkins, and I don't have to make them from scratch!  I'm still looking into treats-honey has a lot of carbs, so it's got to go. He can have pork rinds, and lots of them, too. In some ways, once I figure out how to do carb counting and ratios, this will be an easier diet.

My niece Jenny volunteered to come over and help out today, so I was able to get much more accomplished. The big thing was yet another phone call to Children's to file my wish to change doctors there. I had to make a statement about why I wanted to change, which I really didn't much want to do, but they keep track of complaints so they can catch problems....So I made a statement. They will call us in a few days to let us know who we have been reassigned to.

I also slogged through some laundry, some cooking(Ben gets to eat lots of bacon, so I cooked 4 lbs to keep in the freezer) and finally cleaned the bathroom. This is the most relaxed I have felt in days-thank you Jenny!

The big kids have AWANAs tonight-they are really excited. I hope the rest of my day goes as smoothly!

Teena