Sorry if you checked in earlier and it was broken. Thanks for letting me know, Erica.

I am totally wiped out tonight. Ben held out pretty well until 4 AM, then things got ugly. Dave got him up about 6:30. He had a few more morning seizures, then one in the afternoon and one in the evening. We do not like this trend.

The neuro called me back this morning, and to our surprise, totally agreed that this spinout is a result of the generic brand of Keppra. He told me he would call in a new scrip....and promptly didn't. I called the pharmacy and stopped by-no Keppra. I finally called Childrens' and left a rather irked message asking SOMEONE to call it in in the morning so I don't have to keep giving my kid something that is supposed to stop seizures but is actually making him have them! grrr doesn't even cover it.

BTW, Nate has another sinus infection, Dr. Mark cultured it and this time  The lucky winner is staph. He has a staph infection in his nose. This is nuts. Dr. M thinks Nate must be a carrier and he will be taking antibiotics for at least a month, then we test again. Hopefully we'll get it this time, and Nate will be well enough to play soccer. I cannot believe this.

OK, I'm tired and whiny and a bit (do NOT say Keppra to me. NO!) grumpy. There's more to tell, but I'm wiped and you probably aren't interested in every detail. Tomorrow is April Fool's Day-my kids have huge expectations, and I have been surfing the net for an hour. Wish us luck on pulling off some good ones!

Teena

to get to the point in sleep deprivation where your eyes burn and your head feels detached from your body. I figured you all were wondering.  Things went better last night, but a familiar pattern emerged-Ben had seizures every hour starting at 2 AM.  He is extra tired this morning, and it's making me wonder about medication toxicity, which is common on Atkins or Keto. The question is, what do we do about it? I guess I will put that call in to the neurology department today, and ask a couple of questions.

Ben went in for his GI follow up today...and the doc found nothing...nothing at all. What did you say? Ben had test restults that came back normal? There were no strange unexplained anomolies?  Nope. Nothing. The best news is that Ben tested negative for Celiac disease-he's still sensitive to wheat, but we don't have to go crazy about it. The long term diagnosis for Ben's digestive issues right now is that he is (drum roll please.....) exceptionally sensitive. yeah, tell me something I don't know! All kidding aside, this is really good news. Now we know that Ben's digestive issues are coming from another source, and can pursue them from that angle. In fact, we managed to rule something out for once!I did forget to ask specifically about allergies, though the GI doc said he didn't find anything unusual, so I assume that means allergies, too. I'm gong to have to call back on that,t oo. In fact, I have to call Children's and make two appointments as well. It's going to be one of those Childrens' Hospital phone days. Poor Ben, Nate and Megan are at a friends' house, there isn't anyone to pick up the slack. He's watching Signing Time right now-He can sign several animals now. My favorite is "bat"...

Teena

last night didn't go so well. Ben began having seizures within 20 minutes of falling alseep. They were mostly TCs, but strange ones. After an hour, at which point they were coming every five minutes, we decided to give Ativan. They didn't slow down. They were no longer all TCs, but still coming every five minutes. I finally called Children's after another hour (by now it was after 11).  He had three seizures while we were on the phone. The on call nuero told me to give him a bumper dose of Keppra, and if he didn't improve, call back. After another hair raising hour, the seizures finally tapered off and Ben and I were able to sleep. Needless to say, Dave, Ben and I are all exhausted. We hope and pray this is an anomaly and not the start of another horrible 10 days like the last cycle he was stuck in. The neuro also thought it was a possibility that this *could be* a reaction to the generic Keppra. At this moment, Dave and I plan to wait it out a couple more days to be sure, but will put a call in to Children's tomorrow letting them know we may want to switch back to standard Keppra. We also have and appt. in the morning to get Ben's biopsy results-I don't anticipate learning anything new, but it's hard to say. They keep surprising me.

I've decided to take spring break this week. Sort of last minute, but most of Nate and Megan's friends are on break, so it seemed like a good time. This is our big chance to see lots of people. Nate and Megan are very excited, obviously. Ben not so much, but he still likes to do most of his schoolwork.

Nate and Megan worked really hard and are almost done with their cars. We just need to put sealer on them and attach the wheels. Megan's is purple, the same car she has raced and done well with in the past. Nate has created a very recognizable hot dog. It's pretty cool-we'll see about fast. Next Sunday is the big race!

Teena

Ben more than made up for his seizure free days last night. There was very little sleep for Dave and I-even less for Ben. He has been extremely irritable today and we have been unable to comfort him. He appears quite sleepy, so we are hoping he will settle down early and have a restful night. Perhaps this is just another setback, and the next few days will be good again. We are also oh so slowly edging his Keppra back down, starting today-it may be a bad choice, but we still see so many behaviors that come from medicine overload. I have this niggling doubt in the back of my mind that this off-brand of Keppra is going to work-in short(too late) we could really use some encouragement!

We got a good start on Derby cars today. Megan is ready to paint tomorrow. Nate still has some carving to do-he's hoping to win a creativity award, Megan is going for speed.

Teena

Now that Jennifer is on the mend, please pray for Serena (age 5). She's another good buddy of Ben's who had one kidney removed a couple of years ago. She fell today and broke both bones in her left arm and required surgery to repair it. She is home now, but in a lot of pain. Because of only having one kidney, Serena is not able to take many forms of pain killers. They are concerned about the impact of what she has already taken. 

Ben was asleep by 9:30 last night, and Dave and I were feeling so confident about seizures, we just put him to bed and had a nice evening to ourselves. Well, till 10:30 anyway. We're getting older, you know.  Ben slept through the night and woke without any incidents. I do suspect he is probably having small seizures that are hard to define, but this has to be a step in the right direction.

Today we made dinner for Jennifer's family, and drove it to them in Monroe. They were happy to have dinner, and we always are glad to see one another. Jennifer really looks pretty good for post surgery, and things seem smooth at their house.

On the way home we stopped by my sister's new house, and had her listen to Nate breathe. He's been fighting another sinus infection, and this one has moved into his chest.  Deena says he's ok, but needs to drink lots of fluids. She was getting ready for work while we were there, and had on her scrubs(she's a nurse, BTW) and was wearing her stethoscope around her neck. Ben went up to her, pointed at the stethescope and said "Doctor!"  This is a totally new word for Ben, and since we were in a home and not a hospital, I was delighted that he could make the connection. Deena enjoyed it, too.

Praising God for no seizures!

Teena

Still no seizures-it continues to amaze us. We are so grateful for this time of peace, to be able to see what Ben is like with out his brain constantly resetting after seizures.  He is picking up more and more sign language, and sight reading the words. It seems sign language helps Ben retrieve words, and he's using both to communicate. I'm actually having to scramble to keep up...the signs help me translate what words he is using (starfish, for instance, is dafiss, and I would never have guessed it...even my powers have their limits)  If you have little ones, definitely check out the Signing Time videos. We get them from the library and keep them a couple of weeks.  I'll add a link to their website on the Unlocking Benjamin page, if I have not already.

Ben had OT today. Jonathan had not seen Ben since he has been seizure free, and was amazed at the progress he is making. They had some conversation, Ben followed directions,and was overall much more capable than in the past. Apparently the difference was so significant one of the other OT's came by to tell him how much progress Ben is making.  Jonathan had several suggestions for home therapy-we bought Ben one of those heavy medicine balls to haul around the house. It provides proprioceptive input(your sense of space...it's one reason why he is so touchy feely and falling down all the time. That actually feels good to him). The other big suggestion was to get Ben into swimming. Ben has been swimming since he was 4 months old-actually swimming.(thanks, Danya). However, we pretty much called a halt to that when we realized chlorine, being a harsh chemical and all, is bad for Ben. Vomiting and spaciness are often the result. So the search is on for a salt water pool to visit that is affordable. <insert derisive laughter here> Nearby Bastyr University has a saltwater pool, but the cost is pretty prohibitive.  I know all three kids will want to go, and that adds up in a hurry. What a blessing that both Nate and Megan can now swim on their own! We'll work it out one way or another.

Nate and Megan are coming along in finishing their AWANA books. We are really encouraging them to work hard and finish early-you never know how things will get done until they are done! Megan and I got a good start on her Derby car, and Nate and Dave have carving plans for the weekend.  This is really a fun family event-we all love race day!

It's been a quiet week for Nate and Megan. We really haven't done much, just been home and finshed some projects and concentrated on school. For me, who hates to be on the go, it has been bliss. Come to think of it, they haven't been complaining either. We really needed the rest.  Plus we all really wanted to finish reading Incident at Hawks Hill.

I love that several of you went and looked at the stroller! They have actually come down in price quite a bit in the last couple of years. we were going to buy one a year or so ago, and opted to wear out the baby jogger instead. Apparently, the one pound Ben has gained in the last year(if you don't count what he lost and then re-gained)put him over the wieght limit on the baby jogger.  The therapy stroller has a 100 lb weight limit-Ben's got 60 lbs to go!

I received a note from Erica last night-Jennifer has taken a turn for the better, and to the best of my knowledge was released this morning.  We're praying for a blessedly simple re-entry!

Teena

Ben had a brief..episode last night that may have been a seizure, I just wasn't sure. And that was it-no more! it is looking more and more like his infractions over the weekend(red dye #40 lollipop and peanut-butter rice candy pb and rice being his worst two allergens) triggered the seizures we saw on Sunday and Monday. When they say complete adherence, they mean it!

Ben is better today than we have seen him in days. He has been having a lot of side effects from starting the Nystatin, and the raising and lowering of Keppra. Today we see his balance restored, the drooling is gone for the moment, his energy and giggles have returned. He's back to settling in to games and wanting to play with everybody. At this moment he is running up and down the hall, yelling. We can't understand him, of course, but it looks like a really fun game.

Other interesting things we are noting-Ben appears to be revisiting, or visiting for the first time, some baby/toddler developmental stages.  For instance, he's pointing at everything. We tell him the word, and he points at something else. It's Ben, so this comes and goes, but it amazes us when it happens. This is the kid who was never supposed to be able to point.  The other thing he's doing is babbling. That was one of the oddities of Ben's baby years-he never babbled. At least, not like my other two.  Now he's doing the "mama, mama, mama" thing, and total incomprehensible, well, babble.  Dave and I are hoping this means a part of his brain, perhaps the language center(cross fingers, please, God), is firing in a way it never has before.  What's making the difference? who knows? who cares?  We just like to see him hitting developmental stages, even if they're about five years late.

Another challenge that is coming our way is that Ben has outgrown the baby jogger. As a family we take a lot of walks(it's a great stress reliever) and we love to hike. Ben's energy levels to the contrary, because of the low muscle tone(Ben's muscles are not hard and wiry like you would expect, but squishy.) he tires easily when performing any repetitive motion like walking. He simply can't keep up with us for any amount of time.  Now that the dryer is out of the way, we are on the market for a therapy stroller. We hope to purchase it before summer. I'll post a link so you can see a pic of the current favorite

 http://www.especialneeds.com/special-tomato-jogger-all-terrain-stroller.html

hmm, doesn't look like that's a working link, you'll have to copy and paste if you want to see it.

The older kids and I are turning our attention to spring sports this week, and by sports I mean the AWANA Grand Prix. Megan will be racing the same car she took 2nd place with last year, and Nate is designing a new car. He's really got to start carving, the race is in two weeks!

Soccer is coming, too. There is a shopping expidition planned for our future. Megan will need to be totally outfitted, Nate most likely will need new shoes.

Teena