Here we are aready in March and still have not updated since the Decmeber egg. Trust me when I say being a stay at home mom is much more than I expected! LOVE it , wouldnt change it for a minute, but it sure makes me wonder how I ever got three kids out the door and fed by 6:45, to three different drop offs, while selling the house and leaving it in "showing" order, to only return at 6:00pm feed the crew again for dinner, finish the work from my work day, spend some time with the husband and start all over and do it again the next day.
Shoot that was easy compared to this!;-)
December eeg was very different from the one before. I could feel it in my bones. I could sense it from the eeg tech. Jake, again was supposed to be in for the entire day, but was only there 1 maybe 2 hours before we were "released."
I knew in my gut it wasnt the "happy ending" that we had a month or so before. I was told to go home and they would call me after the weekend, or maybe a week or so to report the results.. Yeah right!! I said, "no , i was promised we would be told if we could take drugs away or not..." so after a little waiting, dr h came and confirmed my worst fears..we have seizure activity.
booo..hate to hear that. however, he said the activity he saw was activity that many people are walking around with today and have never and will never see any effects of. He wanted to be cautious though, and did not want to take away any more meds at this time.
Jake is still on felbatol, and clobazam, and a butt load of vitamins, but he didnt have to add back the Depakote.
Since losing the depakote, Jake's background slowing has disappeared! within 4 weeks minus this drug, it is gone! He has had it since Doose became a true diagnosis almost 3 years ago , to the day.
Background slowing in basically a "fog" that Jake has been in since having seizures and being on so many meds. It is what has caused the drooling, trembling, stuttering, and out to lunch personality. It is the static on the tv that is hard to see through, because you're focusing so much on trying to see through it.
Jakes slowing was 3-4. "normal" children/people have a slowing of 8 or 9. in other words his was VERY slow. that static was very intense for him.
since the depokote drop, Jake has started to read, ride his bike, take on more and more friends and appear as a more "normal" child. he can run with out falling over or holding his arms like a T-rex and most importantly, we can feel our little boy coming back to us. There are many, MANY more hurdles to jump, but we will take what we can get.
I certainly wish we could have rid his little body of more drugs, but am certainly happy with the results thus far.
thanks for praying for our little man! there are many more things to update! come back tomorrow and I will fill you in!
Trust in the LORD with all your heart,
and do not lean on your own understanding.
In all your ways acknowledge him,
and he will make straight your paths.
Friday Fellowship - Jenna Buettemeyer
23 hours ago