the good news or the bad news? the bad news is, there is no good news. Ben had multiple grand mal seizures yesterday and into the night, ending with a serious seizure cluster early this morning where we had to give Diastat. After two hours that wore off and he started to have seizures again. I think he may have a fever-I need to check that, but it has been a crazy morning. We have decided not to go out tonight, then we debated about dividing up and half of us going to the party we were invited to. In the end we decided to be together as a family tonight. We are all disapointed in our own way, but it seems best this time to stay together.  I know a lot of people think Dave and I ought to use babysitters more, and get out more. I understand that this comes from a genuine desire to see us rest.  Sometimes, though, when Ben is in a bad spot (and this is bad...) We rest the most when we are with him, and with each other. We can't ask someone else to make life and death decisions for him, we don't want him to feel abandoned, and our hearts couldn't take being away when he is in such distress!  My parents were going to watch him tonight-i think we will just call them the next time he is having a good day, and the other four of us will go out for dinner. Planning doesn't work for us.

On another note-I have been chatting with dr. Kossoff from Johns Hopkins. He is the developer of the Atkins for seizures diet. He has helped me some, but Ben's special needs have even him stumped. I have decided to forgo trying any more vitamins for the time being. It seems to me the vitamins are causing severe seizures, which is worse than being vitamin deprived for a while. After we finish  weaning off the Topamax (two pills to go!) we will try again.

Happy New Year to all, and may God bless you richly and grow in your hearts in the coming year!

Teena

Dr. Mark called today because he knew I wanted to bring the boys in and he had a cancellation. Nate is improving on the antibiotics, but not fast enough. Dr. Mark took another culture and will let us know what we need to do from her-possible just finish the course of antibiotics. Ben does indeed have ear infections in both ears, but they are viral and cannot be treated with antibiotics. I had been putting colloidal silver in his ears because I suspected and ear infection, but not often enough. Four times a day is the rule here. The good news is, we now have a reason why Ben's seizures are spinning out.  Any kind of infection can do this.  I'll get right on treating him and hope things will improve from here. We can only pray Nate will get better soon. Turns out Dr. Marks real concern is that Ben is so fragile, it would be bad if Nate passed this bacteria to him.  Great.  Things are always so exciting here, why would we need parties?

Ben had two seizures this morning, and only two. He was in a great mood all day, and busy playing.  My friend Julie was here, and has not seen Ben since September, and she confirms that the hand chewing is significantly better.  We also got a call from Ben's origional OT, Vickie. She is filling in for Jonathan over the holidays, and wanted me to bring Ben in. Ben has an appt. for Friday, but Vickie also has an opening on Mondays, and wondered if I wanted Ben to have it.  To date, Vickie is still the best OT Ben has ever seen, so I think we will go for it.  Jonathan has been great-but I don't think we can pass up this opportunity.  I'm also trying Ben on a every-other day schedule for vitamins. We are really concerned about his nutrition, but every time we add vitamins, things get out of whack. He's showing signs of Vit D deficiency, too. So hopefully I can work them back in at least every other day.  BTW, lots of successful trips to the potty today!

Nate's cousin Sam came to spend the night tonight, and Megan is at their cousin Graces'. Sam and Grace are brother and sister, and since the kids get along so well, we end up doing a lot together.  Everyone is happy today!

I am putting together my schedule for January,  and thinking about the insurance hurdles to be overcome.  ugh!

Teena

Ben was seizure free last night, and still is today! yaaaay and praise God! Plus he has been peeing on the potty-that makes us pretty happy, too!

Teena

Today we saw another miracle-Ben walked all the way to and from Trader Joes-this is the longest we have EVER seen Ben walk without his getting tired. He was just thrilled to bits to be walking like the rest of us, and not in the stroller. He is feeling good!

Ben had a halfway decent night, much better than expected. He woke up dry, and peed on the potty, and is still dry. BTW, I have been doing some research, and even neurotypical kids who have been potty trained for years can lose the ability to control that function when faced with this sort of epilepsy. It made me feel less like a loser parent and more like a parent with a sick kid. Any way, two very brief seizures since awakening. The seizures have improved greatly in length an severity-a huge relief. 20 tonic-clonic(AKA grand mal) seizures a day is not pretty.  We haven't had a chance to check Ketones yet, but assume they are good. Ben is happy and running around playing with all of his new toys.

The rest of us are like slugs today, but in a good way. Nate and Megan are enjoying extra screen time, but at some point I will force them out into the snow. They built a 5 foot snowman in the back yard. I think sledding will be on the agenda-we watch four different cars get stuck on our road last night, each for 1/2 hour or more while they tried to get out or applied chains in the middle of the street. Since we don't have chains, we are staying home to sled...and I am walking to Trader Joes for milk. Somehow that got overlooked.

Praise God for improvements and peaceful days!

Teena

We watched that movie today. As each year passes, it takes on more meaning for Dave and I. We too, have a life we did not plan. We too, will be giving our life and future up to a child we love, but still feel the sacrifice. We were reminded how important each individual life is-look how many people Ben has touched, who do not even know him. These were are thoughts today as Ben had seizures every 20 minutes after the Ativan wore off. Dave and I both experienced an outpouring of grief as we realized what sort of CHristmas Ben would have-and then we miraculously got over it and enjoyed our day. My parents came over early, we unwrapped presents and had a lovely brunch. Then we opened our stockings-always a favorite here.  The rest of the day was spent in exploring gifts and enjoying each others company.  My parents have witnessed seizures before, but have never been present for a seizure day before. It was hard a first, but gradually they got accustomed and treated it like we do-once it's over, it's over. God was so good, in that Ben was thrilled with his gifts and played with everything he got. Despite the difficulty, we have never seen Ben happier with his gifts. We enjoyed that more than I can tell you. It was probably his best Christmas ever-crazy.  His big hit was a Plasma Car-a self propelling car he uses and loves in OT.  He also got a tiny baseball bat, and some musical instruments. He loved it all. OH-we replaced all of his Arthur books, too.

Megan is thrilled with her new  stereo and some comfy jammies, Nate is happy with Mario smash Brothers on the Wii. Dave and I got fun things like towels, frying pans, and bed sheets. Ah well.

It was a peaceful day. Not what I prayed for, but peaceful anyway. I suspect Ben is in for a tough night, therefore Dave and I will not get much sleep either. We decided that as long a Ben is having a rough time anyway, we'll drop a pill today. The goal has once again become seeing how the diet will work for him without Topamax. We shall see how things go from here, but I am glad for this peaceful day with my family.

Merry Christmas!

Teena

Ben had one of the worst nights we can remember, but we did not have to use rescue meds. That is a blessing. Today he is still seizing about every hour. Needless to say, David and I are very disappointed and discouraged. We are trying really hard not to let it get us down, and to provide a fun, normal Christmas for Nate and Megan-at least as much as it is within our power. I have found it helps to reflect on what we are celebrating-a miracle that has changed our lives. I step outside of my personal feelings and remember I already have the greatest gift ever given, as do Nate and Megan, and I think Ben, too. Truly, am I going to let myself be shown up by a bunch of cartoon characters on the Grinch, or can I rise above my situation and rejoice in my salvation?

As always, it is hard to watch Ben suffer, and these are severe seizures-he is suffering. Our hearts are continually in prayer that the seizures will stop. That being the case, we have decided to give him some Ativan at bedtime so he can at least sleep-us too. We are all getting maybe 5 hours of rest each night. After several nights, that begins to wear on a person.

David and the kids are all outside using up the last of the snow and building an igloo. It is really cool, if only we could find the camera! It is raining/snowing now, I hope the snow lasts just one more day!

My wish for all of you is that Emmanuel--God With Us--surrounds you and your family with His love and peace this Christmas, and that He will give you all the desires of your heart.

And I do thank you so much for continuing to pray for Ben--your intercession is a precious gift.

This is how the birth of Jesus Christ came about: His mother Mary was pledged to be married to Joseph, but before they came together, she was found to be with child through the Holy Spirit. Because Joseph her husband was a righteous man and did not want to expose her to public disgrace, he had in mind to divorce her quietly.
But after he had considered this, an angel of the Lord appeared to him in a dream and said, "Joseph son of David, do not be afraid to take Mary home as your wife, because what is conceived in her is from the Holy Spirit. She will give birth to a son, and you are to give him the name Jesus,because he will save his people from their sins."
All this took place to fulfill what the Lord had said through the prophet: "The virgin will be with child and will give birth to a son, and they will call him Immanuel"—which means, "God with us." Matthew 1:18-23

Teena 

Ben had a really good night, but not such a great morning, or day, really. Seizures every hour to two hours. When we took his Ketones, they were in the low range. I just couldn't get him to eat all that fat yesterday. Today, however, is another story, and his Ketones are high again tonight. We're praying for a restful night for our Ben.

Despite the rough day for Ben, I took all three kids to a nearby hill and we went sledding. This means I dragged Ben up that hill a zillion times. If I let go of him, he would race across the lanes of the other sledders. We had a great time-Ben would yell "WHEE!" every time we went down, or just giggle in delight (is there any lovelier sound?) He also clapped and cheered when either Nate or Megan made a spectacualr wipe-out. We were all going off of the jumps, but I discovered this evening a sad fact. I am old. Nate and Meg and Ben are running around happy as clams; (oh, Nate sprained his thumb) while my backside is so sore, I can hardly sit, not to mention my serious case of whiplash. ah, youth.  I think the kids had a great time, and this was definitely the cure for cabin fever.

Dave has finally kicked that cold, Ben too. Dave had to stay home and work today while we went out to play. Actually, knowing Dave, he was much happier at home than in the great out doors, but he's not a Maxson, poor guy. We must have our fresh air and extreme sports-apparently even when we are old.

Teena