It's been a week since we started Alex on the Rapamune. Today he goes in for a (sedated) blood draw to make sure his cholesterol and other bodily functions are still doing okay. I'm still debating whether or not I should take Ben out of school early in order to make the hour or so drive up there. I really don't want to take him out early and subject him to such a boring time, but on the other hand I really don't want Alex to have to go through this without me. He always seems comforted by my presence. The blood draw has to be a 3:30 because they're going for a "trough level", which means when the medicine is at it's least amount, right before it's time for his next dose. Ben gets out of school at 3:30. What to do, what to do? They will be giving Alex a shot of Ketamine in his leg to knock him out so they can take the blood. I really want to be there for him. I'm always the one who holds him in a big bear hug when he gets these Ketamine shots, and he does really well. I should go. But Ben should be in school. I wish we knew someone up here who could babysit! Jeremy can't take any time off work, as he's still on his six month probationary period with his new job.
I need to look more into this, but it seems there's something called the septum pellucidum, which just so happens is what Alex's SEGA is pushing against. The septum pellucidum is implicated in pleasure, mood, rage, sexual gratification and more. Lesions of the septum lead to sham rage.
So, need to look in to this some more. Find out more about "sham rage". Good news is, the shrinkage (or surgical removal) of the SEGA, will help...if this is a factor in Alex's rage.
3 comments:
I wish I could help you babysit ... so sorry.
Hello, I am new to your blog and found it via Jennifer Lawler's. You are an amazing writer and photographer and an incredibly brave woman to share your story. It seems to me the minute you open yourself up there are those just waiting to question you, to tear you down and yet they wouldn't spend a day in your shoes.
You and your husband deserve nothing but praise for doing more than what even seems humanly possible to help Alex with his continued medical and emotional difficulties. I cannot imagine your life either before Alex's placement in a group home nor after.
The problems and difficult decisions I have faced with my children seem smaller by comparison, but no less gut wrenching as a parent. I find it hard to look in the rear view mirror and see now all that I missed, all that I didn't know but somehow should have. I wonder how one different decision might have changed things for the better. You are beyond brave for sharing the difficulties of your lives and decisions.
There are only a handful of blogs I follow and I often wonder how the journey started, what that initial diagnosis was like, why/how you decided to have another child, etc. I keep a private journal and it seems I am always, in someway, trying to figure out how I got *here* and I wonder the same of others, too.
Thank you for sharing your incredible story. My hat is off to you for all you've done and continue to do for both of your children.
Kim
Kimberly, thank you for posting. This blog has been private for so long as I'm a fairly private person when it comes to my personal life (especially the hard times). If there's one thing I've learned from being in this situation, it's that sometimes it's necessary to lean on others. Not only does it feel good to get it all out by writing, it's also nice to feel the support. So thanks!! :)
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