Well, Ben had two seizures this morning, and we were handling that ok, but it's nearly midnight, and he has had two in the last half hour. It promises to be a long night. So-did something happen during the car accident, or is this a new pattern emerging-4 days of relief, then horrific numbers of seizures? We plan to muddle through the next day without calling the neurologist, But on Tuesday we will have to call, and he will raise Ben's meds...just in time for back to school. Sometimes, I can't even think past this one moment, or I am so discouraged.....

As you lift Ben up, please remember his friend Jennifer, she is back in the hospital with yet another serious kidney infection. They need some answers, and a doctor who is interested in following through.

 Teena

Becky-I'm thinking of you!

Ben and I both appear to be fine. We're sincerely hoping this won't affect Ben's seizures. So far, so good, David informs me there have been no seizures since Wednesday morning. YAAAAAAY! We're still making an effort to be quiet and rest at home, though there may a trip to the zoo in the near future....

Teena

So we are happy. Ben is really tired, falling asleep early, and waking early in the morning. But things are pretty stable, and we'll take it. We've been trying to squeeze in a few last visits before we start school next week, and have been fairly busy. But we love to see people-it's just hard to plan things these days. My family has been very flexible,so the kids have had some serious cousin time. We also set up the tent in the garage last night, and that has been a lot of fun..without disrupting Ben.

Strep tests came back today-I did have it, but appear to have fought it off on my own. Ben's test was negative, I'm waiting to hear from Dr. Mark what he thinks we ought to do, or if it's best to leave him alone, too. Dr. Mark was not sure he got a good swipe from Ben, and initially if I had it, he was going to treat us both. But since I have fought it off on my own, there is some quesiton about whether Ben needs treatment, or is also able to fight it off(if he has it. tricky). This is also an interesting question in regards to seizures.... but I'm not sure if we can divine anything by what Ben MAY have had. So I guess something to note for the future.

Otherwise, things are Peaceful here-yaaaaaay! Peaceful is good!

Teena

But peace is short lived here- Please pray with us. On my way out to get Ben's meds for the long weekend, I was rear-ended. My neck is stiff and a little sore, but our greatest concern is Ben and the whiplash effect. If there was an injury, this could cause more seizures. So far he seems fine, though a little upset(me too) but we are going to take him to Dr. Mark tomorrow just to be sure.

10 Things

Someday I'll write a book about caregiving, and how to support caregivers, or people who are going through a tough time. Everyone knows someone who is going through a difficult time--what can you do to help? Here are some things people have done for us that have been truly helpful:

Always at the top of the list--pray for them. Second is do something--something that you are uniquely gifted to do, that you enjoy doing, and that you will faithfully do. Tell your friend, "I'd like to do thus and such on these dates at this time. Would that help you?"
1. Write a snail mail card.
My friend, K, writes me the best cards and letters at just the right times. She did when Bill was sick, and she continues now with Annie's illness. These messages are God's love and strength to me.
2. Here's a green idea: give cash.
We had many friends who gave us lots of money in those first few weeks after Annie got sick. One couple, who had had a son in the hospital and who knew how expensive it was to live and commute there, gave us $300 cash--at frequent intervals.
3. Take care of the other kids.
If your caregiving friend has kids, take the kids to their soccer practice, music lessons, or wherever they need to go. Take the kids to a movie. Take the kids on vacation with you. Your friend has no mental or physical energy to take care of the kids who are well--you jump in and help.
4. Food is good.
Drop off food that can be frozen or is ready to eat. Don't stay to chat for more than 5 minutes. Your friend needs food, and peace and quiet.
5. Mow their yard, weed their garden. This is my personal favorite. People did this when Bill was sick, and recently, while Annie's been sick. When I see my yard in order, I am deluded into thinking that the rest of my life is in order too.
6. Clean their house, or part of it. I have a dear friend who STILL comes over and cleans my bathrooms once a week. She is someone with a very busy life, and bad knees. But what a faithful friend. Clean bathrooms are almost heaven--especially around here.
7. Organize help. If you're the motivator-organizer type, and you see what needs to be done for your friend, you make the calls and get people moving. I had a great friend like this when Bill was sick--she never took no for an answer from anyone--and I have a friend like this now. She checks in on us every once in a while to see if anything needs to happen.
8. Send flowers.
Or plants, or lattes. Little expressions of love always come at the right times. I had a friend when Bill was sick who brought me flowers about once a month. I loved it! Now I have a friend who caters to my caffeine addictions.
9. Support their marriage.
When Bill was sick (and could still travel) we had people who gave us weekends away now and then. Now, I have older & wonderful kids who can babysit Annie while Bill & I go on date nights. Remember that critical illness plays havoc with marriages. Give your friend a respite from the crisis they're enduring.
10. Pray more. Ask God to give you ideas on what you can do for your friend. You have unique abilities that allow you to do exactly what your friend needs today.

That's my list. I'm sure you guys have some ideas, too, of things that people have done to help you. Post your ideas so I can add them to this book I'm about to write... tomorrow.

First, let me say, Ben was seizure free all last evening and so far this morning. Yaaay! Dr. V called and said though he could nno find any research saying Liver Life could cause seizures, he couldn't find any research that says it can't, either. Therefore, we are to take him off Liver Life for at least a month. At this point, we want to take him off forever!  Mark predicticed that by today, the Liver Life would be out of his system....I'm hoping that he's right! We were so happy to get through the evening without any seizures!

A big decision was made yesterday by myself and Patti. After discussing Ben's history from the angle of detox of metals, and the sorts of foods that have really given him trouble, we have decided to go ahead and declare all foods except fruit ok for Ben(within the confines of SCD). That being said, he has been crying about watermelon for about a month now, so yesterday I let him have some. He was so happy! Of course, it made him very twitchy, but if that is the worst we see, I think he can have watermelon every once in a while.He also ate cubed goat cheese for a snack, and had tomato sauce with his casserole.  woohoo! for variety! I plan to use an egg in his pumpkin pie, and to let him try almond butter today at lunch time. Interestingly, I let Nate try oats this week, and oats are not good for Nate. thsi is a bummer, because he is a big cereal guy, and most cereals have oatflour in them. But maybe with time....The point is, having the boys on less restrictive diets, if it doesn't make them sick, is going to greatly simplify our life. I'm going to wait a few days, and see if Ben can handle raisins-can you imagine, an instant snack for Ben, that isn't messy and he can feed himself? Sounds like Heaven! This makes me think of a little story I want to share with you called The Little, Little House.

 While details change in the various retellings, the basic story is the same. A poor man and his family live in a very little house. It is so little that they are unhappy, and the man, (named Joseph in this version) goes to a wise person, often a rabbi or a neighbor, for advice. In The Little Little House, Joseph goes to his wise Aunty Bella. After telling her the problem, "We can never be happy in such a little, little house," he asks her what to do. If fact, Joseph asks Aunty Bella what to do numerous times.

The first time Joseph asks, Aunty Bella tells him to move his six chickens into the house, saying, "See what a difference that will make!" That makes things worse, not better, and Joseph ends up going to Aunty Bella for help again and again. Each time, she tells him to move more animals into his little, little house, saying, "See what a difference that will make!" Finally, with six chickens, a rooster, a cow, and a smelly goat in his little, little house, Joseph is frantic. Again he returns to Aunty Bella's house. This time, she tells Joseph to remove all of the animals from his house. That makes such a difference that the house no longer seems too small to Joseph, his wife, and their three children, and they are all very happy to be in their little, little house.

Teena

A friend of mine who also has a seizure kid with multiple issues, and has her own blog( In fact, you can get there from here, under blogroll on the bottom lefts, says Annie Sullivan)wrote a lovely letter to friends an family about how to help. I'm going to post it separately today, and add it to my own list of how you can help.

One more thing-Ok I am officially addicted to Face Book, I have so many friends on there!  I joined several Autism groups looking for treatments, and a man from Bangladesh who is trying to raise Autism awareness there began asking me some questions about how we are treating it here....and an hour later he is adding this website to their group resources for study. So maybe we get to be a part of the solution to the Autism puzzle-wouldn't that be cool?

Ben had two seizures before Bed last night, and three before he woke this morning.  Actually, as I type this, I realize that is more in line with his previous pattern.  David and I cannot believe we are longing for days when Ben had 4 seizures.  Truly, we are making ourselves crazy looking for causes. We are currently researching electromagnetic field interferance (something I experience, but is a very nebulous diagnosis). We already changed out the phones that seemed to trigger seizures, scarcely use the microwave, Dave is looking at getting rid of the Wi-Fi and we are staring out our back window at the giant power station and wondering who we can call to find out if they changed something in January.  The whole time we go through this as we start buying organic, ordering our grass fed beef, using only vinegar to clean, rid ourselves of simple technology (soon we will wear tinfoil hats) we wonder how we got here, how did we become these insane people we have always made fun of? Then we look into those huge, sweet brown eyes, and remember how they never used to look back. We remember he never used to speak a word, ever. We remember he only used to sleep four hours per night. We remember the hours of screaming, the 8-10 diaper changes per day, the huge black circles under his eys, the weekly trips to the doctor for yet another infection, the hyperactivity that would never have allowed me to type this blog in the middle of the day.  And then we thank God that He has made us these crazy people, that He has shown us these things, that He has had mercy on Ben , that whatever else Ben is, he is happy.

Teena

Ben only had one seizure during the night, so we all slept better. He is very happy, chatty, and rather hyper today. Unfortuntely he has had one seizure and one "episode" where we think one started and then didn't happen, since he woke up. But his happy mood and our nights sleep has vastly improve our outlook.

Did anyone else notice it smells like fall outside?

Ben ended up having 5 seizures in an hour-the last was a few minutes long, so we went ahead and gave him Ativan. The seizures immediately stopped, and he is still very happy. My mom is here, so I am going to try and get ready for school today.

 

I was pretty successful in getting things ready for school-thanks mom!  Now if only the rest of my curriclum would arrive!  Ben had a couple of "episodes" while my mom was here. Then he had a full seizure while in his bath about 20 minutes ago. It's still better than 12 per day.  Somebody has been praying, because I am generally weathering this pretty well. Some days are worse than others. Today Ben was so happy, so cheerful, and I saw great stuff from him-lots of talking, naming objects, imaginative play. I've been giving this whole idea that he is detoxing too fast a lot of thought...it makes sense if the seizures are from rapid detox, we would see these leaps of development after each cluster..so we're not crazy after all!

I did speak briefly with the neuro today. They are taking the suggestion that Liver Life might be a trigger very seriously, and looking up ingredients. So we are staying at the current dose until Dr. V has a chance to look at it more closely. This makes us happy, we're feeling like Dr. V is becoming part of the "Ben" team.

We are slowly adjusting Ben to his new glasses-he wore them for a few minutes today. His eyes get all big when he puts them on, and he truly looks at things like he has never seen them before. One thing I really like is that he makes better eye contact with the glasses on. Maybe he can focus at last. It will be fun to see what he does the first time Bob the builder is on when he has his glasses on.

Praying for a peaceful night

Teena