Today was great, so we are hopeful it will be a restful long weekend. There is no internet service where we are going, so I will post again on Monday.

I managed to make several goodies for tomorrow, particularly some special treats for my boys who can't eat half the food at any gathering. I think they both will be pleased.

for Nate I made gluten free casein free ice cream pie with soy whip, and a gluten free casein free pumpkin pie, and peanut butter rice crispy treats. Fro Ben I made chocolates and mints and more pumpkin seeds, his current favorite treat.

Happy Thanksgiving!

Teena

No doctors, no nurses, no hospitals(PLEASE GOD!), no appointments, no tests, no needles,no symptoms, no inusrance companies, no phone calls, no research, no medical emails for Five glorious days! ahh, bliss

I only have a minute-Dave is still at work, and Ben is having a terrible night involving vomiting and many seizures. He slept fairly well last night, but I tried the 5 HTP and I think that was a mistake. No 5HTP tonight, He is sleeping and drank his seratonin, so hopefully things will turn around for the rest of the evening. I still have so much to do!

Teena

Ben had three brief seizures this morning, and then none. He is now napping. Those were two amazing sentences to come from my house! We reintroduced Melatonin last night because he is just not sleeping without it. So far, it seems to have no ill affect.  I also gave him some cream today because he sure didn't get any better without it! We are still going to wait until after Thanksgiving and our trip to continue weaning off of Topamax. We want his body to rest, we want him to have a break, and all of us to enjoy our trip without all the stress.  The tea did come today, so I will start giving that right away.

In the meantime, I am making lists, preparing food, getting together maps and Sequim event calendars(ok, I really am not into computers etc. but I love getting info from the internet). I am making myself crazy, but slowly it is all getting done, and I will not be crazy on Thursday(well, maybe)

Over the weekend David and I posted several pictures on facebook of our old camp days, quizzing, and a little highschool. We heard from so many people about our pictures-it was so much fun! It was a great way to take our minds off of things and reconnect with people. It was, all in all, a relaxing weekend. Ben was busy, but not crazy, and played with toys instead of beebopping around and getting into trouble. Nate and Megan had a cousin over to play, and they all played Hide-N-Seek, even Ben. It was so nice. Praise God for  pleasant weekend!

Teena

We are trying to get used to all of this. It gets easier as time goes by and the fear factor gets lower.  Ben slept fairly well about half of the night, but seizures greeted us in the wee hours. He still had fewer today than in past days, but we were really hoping for another break.  We are noticing that Ben's seizures are greatly reduced or stop when he takes this seratonin dopamine Dr. Klein gave us.  So we are experimenting with when we give it. Today he had it twice, tomorrow we're going to try three times, and see if the afternoon goes better. Teh detox tea didn't come, so we are on our own for a few more days.

Today we drove to Mt. Vernon to pick up our quarter of grass fed beef. It was a really nice drive, and I cannot believe how much meat is on 1/4 of a cow! Needless to say, my freezer is full. We also stopped at an animal shelter in our quest to get a second dog(it's been a quest for two years, so don't get upset)We saw a dog that looked almost exactly like Athena, and had a similar temperament. It was eerie. This dog was two years old, so it wasn't another dog from her litter. It was almost too much to leave her behind, but we did in the end. 

Teena

yesterday went beautifully. Ben did not have any seizures until around 2 Am. What a blessing! We all needed the rest. He is unfortunately back to normal today, but we are hopeful that things are going to slowly calm down from here. I am praying that the detox tea comes today. It shipped yesterday, so it's not likely, but I would love to have it for the weekend.

His Ketones are really low again, I've no idea why, so I've really got to push the fats at him. He's not really wanting to eat. 

We did make it to OT yesterday. Ben had a great time. We are looking at ways to improve his focus. Yesterday Ben sat down and did the history crafts with Nate and Megan. It took some coercing, but he did it. He's doing some gluing projects and playing with play dough, too. Progress is so slow in every thing. *sigh* I'm not so good at patient. But at least there is measurable change. That helps.

Teena

Ben slept through the night last night with no seizures until 7:30, and then only one. Megan of course, had a nightmare, but that was quickly dealt with and she went back to bed. We are just so happy Ben slept and we got some rest-praise God for HUGE favors.

Teena

Ben had a terrible night, we had to use Diastat at 2. He went right to sleep after that, but the seizures started again about 7:30, and are coming hard and fast. It's a little scary, and I am tired of throwing drugs at this kid. We decided to add one Topamax back in, since that seems to have kicked this mess off, and hope that smooths thing out for a bit. I spent much time yesterday researching weaning drugs, and though I am incredibly eager to get rid of Topamax, it seems we are really going to have to slow down. I ask for your prayers, I know you all pray for us, but I ask for extra prayers today-We've been getting 4-5 hours of sleep per night. The emotional and exhaustion are getting in the way of rational thought. Ben's sleep deficit cannot be helping the seizures. It's the number one thing they ask you when you take someone with epilepsy in. I've also added some supplements from Dr. Klein back in-I took them out because of the rash (now gone) so I am going to give them another try. I also ordered that tea online, I can't fine a pure form anywhere else. I hope it comes soon. Ben actually trembles like someone going through detox. This is just horrible to watch.

Ben remains his  happy little self-Amazing. If only my heart could be so untroubled!

Teena

My mom came over today and brought lunch and a bit of clarifying sanity ( thanks mommy, I needed that!) She also folded laundry and took Nate to the dentist so I could deal with Ben. The seizures tapered off in the afternoon, and we are getting a much needed break tonight. I pray it continues all night! Ben is super hyper right now, I dont' know what that is about, so sleep seems a long way off. But I am counting my blessings for him to get a break. Praise God!Lots happened today, but Dave is not yet home, it's almost nine, and I have to get kids off to bed, so it will have to wait until tomorrow.