It's been a crazy busy day.  This morning Ben had what we think *may* have been a stop and stare seizure. He just stared, and wouldn't turn to look at us, blinked a few times. But when David asked him to give him five, Ben did it...just very slowly. He had another similar episode this afternoon, and Dave thinks one yesterday.  We don't know what to make of it.  Today is the official day 10 after working with Dr. Klein. Smaller seizures is definitely an improvement.  I spoke at length with Dr. Mark today about all of this. The plan we came up with is to keep lowering the Keppra and give Dr. Kleins' treatment another week. In Mark's opinion this is an improvement, and is working. He also said he would rather see Ben on Topamax, Dr. Vlceks other choice, than Keppra. We are slowly working our way towards that anyway, but Mark's seal of approval always makes us feel better.  If I get two seconds, I may call Dr. Klein and discuss what we are seeing with him, to see if this is a normal progression pattern. We like patterns. Patterns are happy and safe. Chaos is bad. Very bad.

I also took Ben in for an Occupational Therapy evaluation today.  He saw Vickie, his old OT.  It went really well. Ben cooperated with her, and was excited about trying all the toys. Vickie was amazed at Ben's new muscle tone(almost absent 18 months ago)She also commented several times on how social he is and his great eye contact, ability to follow directions, and how healthy he looks. (she saw him pre SCD)  This was soooo affirming-Vickie doesn't pull her punches or try to make parents feel better. I love this about her, though it has been hard to be on the recieving end.  So to have her be impressed means he's really come a long way.  Her exact words were "with all you have been through in the past year, I cannot believe how well he is doing!"  Vickie is a big advocate for public school special needs programs, but when I discussed with her my concerns, and the other programs I am planning to involve Ben in, she was totally on board.  In fact she agreed with me that it is pointless to focus on academics right now, but that his play skills need work and will really help with the verbal. The only problem we encountered was that we both know OT can cause seizures because OT reconnects areas of the brain that are disconnected.  So she is going to do some research and let me know what she thinks is the best option. Mark was a little doubtful as to whether this was the best idea right now as well, so we may have to put off the actual therapy.

Sleep continues to be a problem but it has improved a little.

Tomorrow Ben sees the eye doctor-THAT's going to be interesting. 

Nate adjusted to being home, Megan leaves for her camping trip on Thursday and Nate banged up his hand pretty good trying to help Dave put the window air conditioning unit in.  It just never stops around here. Did I mention chaos is bad?

Teena 

*update*  I did call Dr. Klein and got the man himself. He said this is what he expected to see, and there is still swelling around the areas he adjusted, so give it another 11 days, and then call him again, Ben may require further adjustment. But as far as Dr. Klein is concerned, Ben is right on track. This is good, I'm thinking

It was greta to get to pick up Nate on Saturday. He had so much fun at camp. I'm not sure he stopped talking to take a breath until shortly after we made it home. It was a great experience and gave him a much needed break.

That night, I got the night off to go and hang out with the Jetstream folks at our annual JetCamp. From what I hear, Nate pretty much just crashed and then slept in until late this morning. It was Teena's turn to go to church. So, the boys and I stayed home and watched a couple of soccer games and got a few projects done around the house. This afternoon, Megan, her friend Emily, and Nate put together a lemonaid stand complete with lemonaid, candy and water balloons. They did pretty well and had a lot of fun in the process.

Ben had a short seizure on Saturday morning, while I was on the phone with my Mom, (it's amazing the things people do while on the phone these days :) ) which continued on the 36 hour pattern. So, we were expecting another one this evening, but by the grace of God, it didn't come. We'll see what happens tomorrow.

Thank you for all of your prayers and calls and emails over these last few weeks. It has been a crazy new set of twists and turns on this wild ride.

David

Yesterday did not go as well as we hoped. Ben had a seizure in the bathtub at 6:30. It's amazing how fast I can catch a wet, slippery boy when there's water involved.  We are on a 36 hour schedule now...which is better, at least. And the seizures are short again.  We took the Keppra down another ml yesterday, and we're hoping to see a change.  Dr. Klein's ten days are not quite up, and though our hope grows dimmer, it's not quite extinguished yet.  He is sleeping terribly, and that factors in to the seizures-he wakes about every 15 minutes. It could be lowering the dose, it could be related to Dr. Klein's work, it could be taking him off the Liver Life... We have waaaaay to many variables about pretty much everything, and are praying for clarity and sleep!

This week Ben learned to skip, and whenever somebody talks to him, he says"what?"-makes us happy because at least he know no he is supposed to respond. Baby steps! 

Megan finished up VBS today-she really had a wonderful time. It was a great activity for her when Nate was gone. I really think she enjoyed getting more attention from Mom and Dad, and I think this week was really good for her.  She's very happy with her special time. Dave and I are exhausted!   But we really enjoyed focusing on Megan, too.  We got to talk to her alot, and really hear from her in a way there is never time for. We really enjoyed that, and are going to try and make it happen more often.

Today was David's birthday, and the bike he got as a present got a flat on his way to work, poor guy. He had that sort of day.  However, my sister took pity on him and brought us a home-cooked meal ala Red Robin, and we had cheesecake for dessert and went for a walk on this gorgeous night, so it wasn't all bad.

Nate comes home tomorrow! Yaaaaay!

Teena 

the last post was news, this one is opinion.

I had a long talk with a friend recently, that got me thinking about all the things people ask us, and we don't really tell the truth about. People ask these questions, but when we answer truthfully we get two responses-"you should accept things how they are and get on with your life" or "God will do miracles!, you have to have faith!" The reality of where we are is somewhere in between, and it is hard to watch your faces when we tell the truth, because what all of you beloved people are really saying, is that you don't want us to hurt anymore.  So, here's the truth of where our hearts are now.

As long as Ben is hurting, we will be hurting. We will hurt at every rejection because he is different, at every strange look from other children on the playground.  We will hurt at every test, and every fearful cry before a seizure. We will hurt at every tantrum because of medication, and every fun thing we miss because Ben's behavior is unmanageable or he is in a post-ictal state. We will hurt when he doesn't understand how to open his birthday presents, and we will hurt when he tries to talk, and we can't understand him.  As long as the world is bewildering to Ben, we will hurt with him, and we will never, ever, stop looking for answers or ways to help him. EVER.

We believe that Ben will always be different. We don't think God has complete healing in mind for Ben. We believe God is still working on him, and us, and you who are on this journey with us. We believe that our dreams for our retirement must change, and our dreams for Ben's future must remain dim.  We believe God has more in store, and this difficult time is not over by a long shot. We hope God is planning a miracle beyond our wildest dreams.  We hope Ben will talk, have friends, a wife, a job and children.  We hope his life will not always be suffering, but God is the potter, we are simply the clay.

We accept Ben for who he is, how God created him, and whoever he is to become. He is beautiful to us, a miracle  that he has come so far, that he still smiles, laughs and has joy with such a life.  We pray desprately that the hyperactivity will not last, that he will truly learn to speak, that each seizure is the last.  Then we pick him up and thank God that he has let us keep such a precious life, that he has untrusted US with one so fragile because HE believes we can do this.  Once again we remind ourselves that Ben is not ours first, but Gods'.  And we give him up to God's plan once more.

Teena 

Ben did have a seizure free day yesterday, for which we were so grateful! However, after the work with Dr.Klein, he slept great one night, and progressively worse since.  Last night Ben and I were up from 11:45 to 3am. He cried and cried that his feet hurt. I ended up giving him an epsom salt bath around 2, and after that he was finally able to relax enough to sleep. However, the number one cause of seizures is...sleep deprivation. So he did have a seizure this morning, was climbing on the bed at the time, and fell backwards onto the hardwood floor.   So much for not hitting his head*sigh*

After dropping Meg off at VBS, I took Ben for a blood draw. At one point in time I knew why Mark wanted to do this particular test, but he and I have been over so many and discarded so many, I no longer remember. However, this one is supposed to tell him something about seizures. Anyway, its' done. Sometime this week there is also a fructose blood test. Not really great since Ben is not supposed to have sugar, but again, this will help figure out where the seizures are coming from, or why, so I think we ought to do it.  I don't know what to do now but gather information.  Some nice people at BioRay(where liver life comes from) have been giving me ideas about how to proceed, and how they found their own answers. Have I mentioned I hate research?

Is Nate home yet?

Teena 

It's 6 o'clock and so far, so good.  Ben slept pretty restlessly last night, and his eye was driving him crazy. This morning it was still red, but the swelling was gone and he is much better, really cheerful in fact.  My mom says he's really busy, but I don't think it's any more so than usual.  We are really beginning to see his play develop, he likes baseball and throwing beanbags. Sometimes he will play trains or cars.  More and more he tries to join in games with other kids, imitating them when he has no idea what is going on. This is the "normal" develoment of play skills, and I think very important before I really try to do anything academic with Ben. For the moment allof his vitamin Therapies are on hold, and still with the speech therapy.  Next monday he goes to be evaluated by an occupational therapist, the same one he was seeing over a year ago. It will be interesting to get her perspective on his development.

It's funny, I compose wonderful, insightful blogs as I go about my day, thinking of little things to write. When I finally get the chance to sit down, none of them will come to mind. It's a bit dull today, but I guess I'm pretty happy about that.

Teena 

It's been an eventful couple of days-Ben did have one seizure yesterday, and one today.  Overall his behavior has been calmer. Today when I dropped Nate off at camp something got in Ben's eye, and he had an allergic reaction to it, developed a rash over half his face and swelled up.  I ended up taking him straight to doctor Mark, who felt that if at all possible, we should let Ben deal on his own, in order not to A. set any siezures off by adding meds B possibly interfere with what Dr. Klein did.  Ben suffered terribly all day, crying that his eye hurt. He msotly laid on the couch, and around 4 he had a seizure.   He finally slept at 5:30, woke up long enough to eat and cry some more, and back to sleep. He will probably wake up at 4AM.  Poor kid, we just wish he could get a break once in a while!

Megan started VBS today and had a wonderful time. Nate was nervous about camp, but once he saw it he got excited and was off and running by the time I left, playing "dust bowl' with a bunch of other boys.  I got to meet with the kitchen lady, and that went very smoothly, so all is well on that front.  We came home a mailed a package right off to Nate that he will get in the next two days. Then he gets to spin the "Wheel of Misfortune!" Megs and I spent some time together today-she is enjoying getting to make all the choices while Nate is gone, and we are enjoying getting to focus on her...when Ben is not crying!

Teena