This post has been on my mind for some time. Hoping it would come to fruition and now that it's here...wanting to write yet not wanting to jinx things.
October 13th 2008...that was the date of Bup's last seizure. It's one year!!! Tuberous Sclerosis and seizures have nothing on us!
This anniversary brings up so many emotions. We are absolutely thrilled that R's meds are continuing to work. He takes Trileptal and Keppra twice daily, which is disguised in a bottle of milk or juice because there is no other way to get him to take it without a fight, tears and a lot of wasted meds. There has not been even one break-through seizure while on this current dosage... not even when he's had the stomach flu and isn't getting his meds. I can't even explain, or convey how much of a relief this is to us...to go a full year without a seizure. It's been so long that recently W asked, "What's a seizure?". B & I were talking about seizures and W didn't remember what they were. This from the little guy who would call me when he noticed that R was having a seizure...also the little man who would pretend to have a seizure once they had finished knocking Bup on his cute little bottom.
You see, our little babe Bup had seizures daily, starting at the tender age of 8mths. Several times a day. At best, when only taking Trileptal, he was down to 9 seizures a day and they were getting more fierce. Knocking him down, his breathing had changed during the seizures...very heavy & rough, almost like snoring, he couldn't respond to you, the tremors had surfaced, his right arm would go stiff and there were times that he wouldn't use his right hand/arm following a seizure for an hour or so. It was frightening to watch them progress in strength knowing that one day soon they would become "grand mal" (to use the old language that everyone knows). I had even discussed with our Neuro nurse about getting a helmet for Bup because he kept hitting his head during seizures and had even had a couple at the head of the stairs...and in the tub which isn't about a helmet but more like a life jacket! Having these seizures halted is such a relief to ourhearts. Once they stopped it was as if Bup's development received a kick-start. His speech started progressing in leaps & bounds, as did his gross motor skills....the poor coordination decreased. Again...more relief and pride surging for us.
So, it's a fabulous day in our home!
Now, why would this bring about different emotions for me? Well, fear I guess. Fear that it'll all come back. Don't borrow trouble! I know, I know...I tell my head this often.
Then there's a sweet little curly haired 2yr old south of the border who just under went neuro surgery to eradicate the seizure monsters...he was once seizure free too...and now here he is fighting to recover and repair...all due to the dreaded seizure monsters. It really tears at my heart...and he's not even mine! How can one not be affected in some small way though?
For now, I shall put away the guilt, put away the fear, and embrace the relief and happiness of our Bup living daily seizure-free.