Back from the Space Coast

We just got back from a nice little vacation down in Cocoa Beach, Florida. Lucas wasn't a big fan of the ocean, but by the end of the trip he was really enjoying being in the pool!

Although we're not sure if we'll ever make it back down to Cocoa Beach, we got to see some pretty unique things down there - including a herd of manatees, the launch of space shuttle Discovery and some pretty amazing wildlife at the Merritt Island wildlife refuge.

Esther and I also both came back with a new appreciation for NASA and the things that they do. Previous to visiting the space center, we both felt like NASA was really good at wasting money and that was about it, but now that we've learned more about the research they're doing (right now they're working on a cure for osteoporosis up in the International Space Station) and got to walk through the 140,000 acre wildlife refuge that they share the Kennedy Space Center with, we've been converted.

Cocoa Beach 2009

Oh Barbara Manatee

We've been on vacation in cocoa beach for the last week, and we'll
have a bunch of pictures to share of Lucas hanging out in the water
when we get back.

For tonight, I wanted to throw up a quick post to link to a video we
shot this afternoon of a herd of manatees mating off the coast of the
highway just outside of cape canaverel. It was a pretty amazing thing
to see, and a lot of the locals who had stopped to watch said they had
never seen anything like it

Hopefully tonight we will get to see the space shuttle go up!

Update 8/30 :

Looks like CNN was on the scene as well

http://www.youtube.com/watch?v=Bxds-rBstQA

Since then...

We talked with Dr. Burris' office on Tuesday and, Praise the Lord, Lucas' blood work came back looking good! :) I said that the seizure count had been averaging lower and he gave the "OK" to begin weaning Lucas off the Keppra. We dropped him by one tablet that day and in ten days. we'll drop another tablet and ten days after that, he will be off the Keppra entirely. He also said that he wants us to increase the Depakote by one tablet per day. So he now gets two of those twice a day and one Keppra twice a day. He's such a trooper swallowing those pills. Our little champ. :)

For whatever reason, Monday night, Lucas had a rough time getting to sleep (this is before any med changes). He then ended up waking at about 0430 Tuesday morning and struggled to get back to sleep because he kept having seizures startle him awake. He had a whole lot that day, repeated the struggle with sleep Tuesday night and Wednesday night and woke super early both Wednesday and Thursday. He had increasing numbers of seizures each progressing day as well. Yesterday, he napped well and went to sleep well. He woke about an hour-hour and a half after going to sleep and so I brought him into our bed for the night. He slept the whole night, until 0630 this morning. His seizure count has been much lower today too. He's around 50-55 now, just before 6pm. Yesterday, he had had as many by 0700. Needless to say, despite lengthy sleep deprivation, I am elated and have felt wonderful all day. :)

I need to get some dinner in my fellows now. Will update again soon.
Blessings!

I know, I know

I am not anti-internet, I just live like it sometimes. Marc gets on first thing in the morning, last thing before bed and countless times in between. I sometimes go weeks without more than checking the weather; sometimes I don't even do that. SO... My apologies again.

There isn't a whole lot to say. Lucas got sick, followed quickly by Marc. Lucas is pretty much entirely better and I think Marc will be in the next 2-3 days. Praise the good Lord, I did not get sick. I just lost several hours of sleep. I'm not quite caught up, but will be soon, I'm sure. In the meantime, hanging out with the most amazing boy is worth staying up for. :)

We called Thursday before last to discuss the effects of the latest Depakote increase, but with Lucas getting sick, the results were unclear, so we have been continuing the path laid out before that and will talk to the doctor's office again this week to see what they say. If they think the Depakote is working, we will begin to taper off the Keppra XR. I will be grateful for this as getting 4 pills in him with his dinner is not always an easy task.

We think, praise the Lord, that there has been some improvement the past few days. He has remained below 70 seizures/day for a few days running and even had 3 days when the count was in the 40's. Dr. Burris said the last time we saw him that his goal is to get the seizure count cut in half and I think that we are seeing that. We'll see what he says. We should be talking with him or his nurse either tomorrow or Tuesday as we are also awaiting results of Lucas' blood work we had drawn on Friday. It is the first blood work post-depakote, so we can see how his body (his liver, in particular) is handling the new drug. It will also check the level of Depakote absorbed into his blood stream. This is used as a reliable marker of safety as far as dosage increases.

I need to get the boy in bed now, but I thank you again for your prayers. I'll try to get up something else later this week. For now, I have added more pics to the July album and invite you all to enjoy!

Blessings!

July 2009