26 Aug 04: Seizure Update

I know it has been a while. Keep reading.

From drop
seizure against
washer/dryer.

I wrote about Weslee's May 24 fall down the stairs during a drop seizure, but not the subsequent ones.  He had another several within the next few weeks including one where he fell against my bedroom door (making the hole in the wall larger), one where he fell UP the stairs which was weird but that happened to be the way he was facing, and one where he fell against the washer-dryer unit. 

My spine is disintegrating but I try to catch him when I see his eyes glaze over and can get to him in time.

The 4 fractures in his back from the May 24th fall have not only not healed, but are causing him a great deal of pain. He's now taking a acetaminophen a couple times a day every day. If you knew him at all, you would know that he's got an amazing tolerance of pain, but this is starting to hurt him so bad that he's getting very despondent.

He confessed to me today that living this way is not tolerable. It's so much more than the word despondent, that I can't even find a way to say it. 

He wants the seizures to go away. He wants the pain in his back and in his head to go away. He wants to live a normal life. He wants friends. And he can't. 

Weslee is even willing to do another SEEG surgery (this time at the Cleveland Clinic), even though the last one he had done on May 1 2019 gave him a stroke and put him in a coma. To be willing to go through all of that again, to chance another stroke and possibly death is something that he is absolutely campaigning for. He doesn't care anymore that he may not come out of it. 

I don't know what to do anymore. It hurts my heart, and with all of my own health problems which are getting worse daily, life has gotten very difficult for the both of us.

What can I do?

Thank you for listening.

Vikki, his Mom

26 Apr 26: Weslee Update

Sleepy son

Reminder: Weslee fell down the stairs during a seizure on Apr 24. I took him to the Emergency Dept as soon as I could.

After comprehensive scans, we learn:

1. Shunt (for his brain bleed) and VNS are still where they are supposed to be.

2. Four small fractures in his spine.

3. Need to follow up with spine specialist.

5. He is very lucky. Could have been MUCH worse.

He has had a continuous nasty headache ever since. The pain is supposed to last for a while... while he heals.

He takes as much acetameniphen as is prescribed on the bottle. It only takes the edge off. On Monday, will make some calls to get him something stronger.

My sweet boy is in so much pain, in his head and back. Hurts to move into a sitting position. Hurts to move at all.