After putting the Klonopin back into Oliver's medicine routine he hasn't had another seizure! I just realized that it's really only been about 2.5 days since his last seizure, but it seems like much longer to us. I don't want to jinx it, but Oliver's been so much more comfortable and alert. Those seizures really wipe him out. He seems like he sees and thinks more clearly and can pay attention to what's going on around him, not so zonked out.
Other good news, his Cuddlebug stroller arrived Wednesday evening, and it's perfect. The features on this stroller rival a top of the line car! It costs almost as much! Thank goodness insurance covered most of it.
Ollie took it for a cruise around the house with Dad. First Dad had to adjust all the straps:
"Hey Dada , whatcha doing?"
Then he broke indoor speed records around our house:
"outta my way Mama!"
Thursday, November 15, 2012
Ollie's new set of wheels!
- Posted using BlogPress from my iPhone
Wednesday, November 14, 2012
look at that little smirk...
Ollie woke up this morning with no seizures. I really hope the rest of his day goes smoothly.
Oliver has now reached his maximum daily dose of Keppra and still having seizures! Every day. He's had at least 7 today. The nurse that works with his neurologist said over the phone that we're "walking the line" between controlling the seizures and sedating him. Well he's not sleeping all day and he's still having seizures, so we need to do something! Don't tell me those are his only options, seizures or sedation. There are many seizure medicines out there. She wants us to try to record a seizure and email it to her. That is much easier suggested than done, but we are trying.
Oliver is awake most of the day until he takes a 20 minute catnap and wakes up having seizures and we end up needing to use Valium and sometimes with morphine to stop the seizure cycle, THEN he is tired. Between the seizures themselves and the medicines, he is out for at least 2 hours afterwards.
We need to get these under control!
To watch his tiny 27 pound body twist and contort, to watch tears stream down his face and his lips turn blue, to hear his screaming and whimpering afterwards. It's pure torture, what I wouldn't do to take his pain away.
He had a few seizures at PT today, and I tried to catch them on video but I only ended up getting the end and aftermath of one. I won't post a video of his seizure, it's too upsetting, but here is what a still photo looks like:
(clicking play won't work, it's a screen shot)
His hands and feet twist inwards, you can see his lips starting to turn purple. He doesn't breathe during his seizures.
Here is a video of the aftermath of the seizure:
Monday, November 12, 2012
I hold him so tightly in my arms, trying to fathom how one day I won't have him here to cuddle. That thought is impossible, I cannot process it, it's like trying to imagine the extent of our vast universe. You can try, but your brain can't fully comprehend light years, like I can't comprehend a life without Oliver. It's too big, it's too much. He's right here with me, I'm staring at his sleeping face and can smell his sweet breath.
He's right here, in my arms.
How can he ever be "gone"?
I spent my night rocking Ollie in his room. Painful muscle spasms keep waking him up and he needs lots of cuddles and rocking to fall back asleep. Our nurse gets here at 8 and she'll scoop him up, then I need someone to rock me to sleep!
Saturday, November 10, 2012
Easy application and easy removal.
Peel off nice and slowly and stick to outside window of your car.
Thank you Nicole and Erik for all your hard work making these stickers.
