First let me tell you that Ben was up until nearly midnight last night, and Dave practically had to sit on him to get him to sleep. It's 8:30, and he's showing no signs of slowing. This is really frustrating. I think I will ask the nutritionist if we could use Rescue Remedy...at least try it. This is just not working. If I get out of bed in the moring, he immediately wakes up. I tend to be an early riser by choice, so Ben is not getting enough sleep. He's so tired, but has never developed any self soothing skills for settling down at night. We keep hoping that he will learn if we force the issue.

  Now I will tell you the miracle-first-no more seizures today! Phew! This is still an exceptional run for Ben, and we couldn't be more excited.  This morning we went to see Megan's friend Maddy in her church play.(she did a great job!) Afterward we went to Jim and Heathers' for a BBQ along with everyone else who came to the play. There were about 30 people there. Ready for the miracle? Both Dave and I got to sit-together-and eat at the same time! Ben just ran off and played with the other kids. The only other time that has happened in the last three years was once when my parents took over for us. It really marked for David and I how far Ben has come while seizure free(mostly) the last six weeks. We are still trying to hold this with an open hand, knowing ourselves not to be in control. We also know many people who had seizure control at one time, and after a year or two, the seizures came back. We know all of that, but hope and pray God will let us hang on to just a little bit of what we have fought so very, very hard for. We find being grateful and greedy at the same time a delicate balance.

  Dave once again proved himself to be "The Man" yesterday by installing locks on both the sliding glass door and the door to the garage. This morning, when Houdini tried to get out and the door wouldn't open, he started yelling "It's stuck! It's stuck!"  It was music to our ears!

Teena

Dave is installing a sliding door lock and a special lock on the back door...I am trying to get Ben down for the night, and he's not having any of that. So I only have a minute to tell you the neuro reduced his meds a tiny bit, Ben is doing a bit better today, and NO SEIZURES!

Teena

the good news-Ben did not have any seizures today! yaaaay! We are so pleased to get even one day of respite.

the bad news-soemthign is up with Ben. He is up to mischief nonstop, irritable, and generally unpleasant to be around. Dave and I strongly suspect this has to do with the recent change in dose and/or compounding of Dilantin. We are interested to see what his next level will look like. In the meantime, we are literally on lockdown in the house. Let me tell you what yesteday looked like...in a list

Pulled from top of gates going to street-3x

Pulled off top of van in garage-3x

Pulled out of turtle tank sitting on 3 foot high shelf-1x

# of toys taken away for trying to throw them through widows or knocks things off walls with them-uncountable.

# of times I've pulled him from the top of the 5 foot gate today-three. It's noon for crying out loud!

deep breath...Dave of course is working late every night right now in the midst of a difficult project. Neither Ben nor I are feeling particularly fond of each other, so it would be nice if Dave could be here. We also have some fun plans for Sunday we would like to attend as a family. I just went ahead and called the doc in case she had any bright ideas, but really I know she's going to be happy he didn't have seizures, and want to wait and see if this wears off. Well, usually it takes Ben four days to cycle through med side effects IF they are going to go away.

Right-no seizures today, I'm happy. Must repeat that many times while pulling Ben off the kitchen chandelier...

Teena

I accomplished very little today. Well, in terms of measurable progress in anything. What I have been doing is copying tons of stuff from the Keto health group and getting it ready to put in yet another "special diet" folder. Bye bye Atkins recipes and rules....

Ben had four short seizures this morning(notice the number is creeping up? makes me nervous, it does). However, he had another really good day. Today was his first day back at OT, and I was really curious to see what Jonathan would say about Ben's progress.  He noted the much improved eye contact, how much more "present" in the moment he is, and how much clearer and more frequent is Ben's speech. All the same things Dave and I have been exclaiming about for days. It's always nice to have professional confirmation, when it's in our favor.

Oh, and so far, Ketones are still a little low. hmmmm. Still working on that, mostly because I am hoping and praying that it is the key to further seizure conrol. 27 days without seizures was a whole new way of life for our family. I actually caught up on sleep....and am already waking every morning at 4 and dozing so I won't miss any seizures. Dave and I are also considering getting a video monitor for the bedroom. We have made considerable progress in getting a going to bed routine up and running and we'd hate to lose the progress. However, we need to know if he is having seizures when he's going to sleep as well. BTW, the key to getting him to go to sleep at night was getting me out of the equation. He would lay down with me, but not fall asleep in my presence.   oh, really cute thing he's doing-he now refers to himself as "Mommy's Baby" and if I go in another room or leave the house he starts yelling "Mommy's Baby!" over and over. We're pretty sure he's trying to tell me I forgot the baby.

Teena

It seems things are a little bit back to "normal" around here. Ben had three brief seizures this morning, though he was fine all day. Most medications have what is called a "honeymoon period" where they work for 2-6 weeks, then stop working. It may be what we are seeing. After some consultation we called the doc today to talk about some inconsistent instructions we got yesterday. That resulted in new instructions for today. I have been having a hard time keeping Ben in good Ketosis, so in addition to raising Ben's Dilantin(and leaving the Rufinimide alone-he's at the top dose for his weight) Dave and I decided to go ahead and switch Ben's liquid meds to pill form. The liquid meds contain sugar, which inhibits Ketosis. We have to make this change anyway in order to do Keto, but we always try to limit his changes to one at a time. We'll see if better Ketosis helps his seizures.

I spent most of today filling out paperwork and making medical phone calls. I got the official call that Ben is to check in for Keto on June 9. I filled out the questionaire for the genetics consult-the third question was whether Dave and I are related. UM, no. Is that common? Anyway...I finished up a bunch of stuff we needed to get done for the kids school programs. I sent in our compounding pharmacy receipts to see if insurance will pay anything on them(10 dollars on a 50 dollar charge, ususally).  I also called the lab that is still billing our insurance from last year...no matter how many times I call to change that. Nate and Megan had to babysit Ben so I could get all of that done. They were fairly cheerful about it, especially since all of that took about two hours. I am so relieved to have it all done though...It turns out that when there is no crisis, and I'm not running the big kids all over the place, I'm a fairly productive person. Huh.

Teena

I'm afraid Ben had a seizure this morning. It's discouraging, but we are hanging in and still hoping the Ketogenic diet will put Ben over the top for seizure control. So far our spirits are staying up...this is still far preferable to where we were, and Ben is so happy and tuned in right now.

Today began what I think of as our month of Tuesdays. My parents babysat for me so I could go to Ben's appointment alone and work with the nutritionist to plan Ben's meals while he is in the hospital. She is really planning to "fast track" him and try to have him out in two days-I think for everyon'e's sanity. She recognizes his activity level is not going to work in confinement. She is also pretty confident that Ben will adjust well since he's already in Ketosis. She even told me this would be a relatively easy adjustment for me, too,  since I'm already used to cooking from scratch and using alternative ingredients. I felt a lot better hearing that. I'm so tired of special diets!

That was my first Tuesday. Next Tuesday Ben and I head to Everett and take step one in the genetic testing department. I really don't know what to expect, but am hoping it will lead SOMEWHERE!  The following Tuesday we are back at Children's for Keto induction. Then we get to start follow up labs...most likely weekly on Tuesdays.  BTW, when Dave took Ben in for his Dilantin level on Monday, the nurse was all "oh, he doesn't like the giant needle we stick in his arm when your wife brings him? Well, since you're Dave and all, let's give him this tiny finger prick he can't even feel. Then you don't have to know what your wife goes through, and you won't have to feel bad for holding him down through repeated painful procedures"  OK, that's not REALLY what she said, but close enough. Honestly, they all take pity on Dave. I was really happy for Ben to have a minor procedure, but feel rather bitter at the way Dave always gets the days when nothing major is going to happen. grrr

I just put in a call to Children's to see if the doc had any instructions for me. Not yet, but the nurse is going to call me back tonight after giving the doc all the newest information. Ben's Dilantin level was very low...yet another weird inconsistency. Interestingly, Ben's Ketones have been inexplicably low the last couple of days. I am focusing on getting those back up today...more cream, more cream!

Teena

hmm,Children's just called. Want to hear something annoying? I forgot to pick up Ben's medication at the pharmacy while I was there, alone, without a screaming, frustrated Ben to stand in line with.  But that's just annoying, not why they called. They called to tell me to raise Ben's Dilantin and Rufinimde to see if that will stop the seizures. The fun part will be that Ben is to rotate doses of Dilantin every other day. Dave and I will have to make another medication chart-this is too confusing!

Yesterday was good, Nate was recognized in front of the church for receiving his Timothy Award, and once we got home, Dave went on a long bike ride with friends. We are loving this nice weather-there is definitely going to be a BBQ today.

However, a familiar sensation woke me at 5:30 this morning...and at 7:01, and by 8:00 I was just sitting  there watching. I made the mandatory call to Children's("oh, my notes say we have spoken a couple of times before") Dave gallantly offered to take Ben in for his blood draw to check his med levels. While I am so unbelievably glad not to have to do this, I also feel incredibly guilty(a mother's constant friend) that Ben still has to go. Poor baby!  Once the results come in, the Neurologist will call me back and let me know. He seemed to think Ben is having breakthrough seizures because of his cold. I sincerely hope he's right.

Teena