Still Seizure Free!

After 4 days, we are still seizure free!! Ruby has been very fussy, but she was in a better mood tonight; it was fun to see her giggling and active. Neurology scheduled an EEG on Dec 21 to make sure the seizures are gone for real. If all looks good on the EEG, then we will stay at this dose for probably another month after that, so we could be on ACTH for 2 more months yet. This sounds like a long time, but this will be the last time we do steroids, so we want to do all we can to keep the seizures away. She did gain a pound in the last week; I am dreading the weight gain again, but it is worth if if the seizures stay controlled. Thanks for your prayers!

By the way-- we had a great Thanksgiving. My husband cooked a 21 lb turkey for my family, his parents and some of my extended family. He did a fantastic job! He has earned the right to cook the turkey every year. Mark's parents were here over the weekend and we had a great time catching up with them. They spoiled us and the kids-- we really appreciate them! I have pictures of the turkey and the kids with grandpa and grandma that I will try to post soon.

No Seizures!!

Today is Ruby's second day without seizures! We think she had one mild one on Thursday and then we didn't see ANY yesterday or ANY yet today! We are very excited that they have stopped with only 30 units of ACTH. She isn't sleeping great and she has been fairly clingly and crabby again, but I will take that if it means no seizures. I noticed she is also cutting a few teeth, so maybe that is adding to her crabbiness.

So, once again, we praise God for seizure freedom!

Less Seizures

We have had a good couple of days. The sleeping pills have been working pretty well. They help Ruby to sleep about 6-7 hours in a row, which is so great for us. Everything is better if we are somewhat rested! I think the sleeping meds have also helped to calm Ruby down in general because lately she has been a pretty happy girl.

And then for the great news... I have only seen 2 seizures so far today!! Last week we could have been up to 15 or 20 by now, so we are on the right track!! We praise God for sleep and the decrease in seizures. Maybe we will even have a seizure free Thanksgiving!!

Sleeping Pills

I talked to the neuro this morning and we are going to increase Ruby's ACTH dose to 30 units tomorrow morning; we are at 20 units now and last time we started at 80 units, so we will still be at a much lower dose. He also prescribe sleeping meds for Ruby!! I am very hopefully that this will help her sleep for 6-8 hours straight (that would be heaven!!!). It would be so much easier to cope with all this if we could get a good nights sleep.

On another note--She was great at therapy this morning; all smiles, even though she had been up since 5am. I think overall her head control is a little better lately too; I am sure getting all those meds out of her system helped with that.

We are hoping for a great weekend of sleep and less seizures!

Not Much to Report...

The steroids haven't affected Ruby's seizures much yet. I am a little disappointed, although I know they could take a lot longer to work than last time because we are at such a low dose. She has been clingy and she isn't sleeping great, but other than that, she still is handling them okay. Please pray hard with us that we will see a drastic decrease in seizure activity by the weekend; that would be such an encouragement for us. Thanks!

Pictures

Here are a few new pictures-- mostly of Charlie. His new favorite things are his stuffed animals (especially his bear and caterpillar) and the cardboard from the recycling. He also loves electric cords (problem I know) and dog food :) He keeps us moving, but he is such a blessing.

So Far So Good?

Today was Ruby's 4th steroid injection and so far she is handling them pretty well. She has been fairly calm and smiley; sleep has been decent, especially if she sleeps with one of us on the chair. I know we aren't supposed to do that, but hey, after a year of not sleeping through the night we will do anything for a night of sleep :) Her seizure count is about the same; I think she had a few less yesterday, although it is really too early to tell. Last time her seizures stopped after 4 days of steroids, but she was getting 4 times the dose, so I figure this time around it will take longer. So far so good.