Again I find myself not updating. I am quick to update on Facebook because I can do it from my phone, but I have a harder time sitting down here to really type things out.
Emily is no better. I have had to pick her up from school this week a few times, due to increased seizures. On Friday it was the worst. She has gotten her rescue meds (clonazepam wafers and diastat) daily. Her seizures are out of control. I just emailed the neurologist, and the neurosurgeon. I know the VNS won't help immediately, but the sooner we get it done the sooner it can help. And in the meantime, this is insane. This video shows one of her seizures, it starts at about 55 seconds.
The girl can't even sit up and play without falling over. It's horrible. Her development is regressing before our eyes and it makes me want to scream. I hate this. :(
We used to revel in the "new perfect" that was our life. Raising a beautiful girl with multiple special needs showed us that "perfect" is all in our minds. Emily's life was perfect. It was happy, it was brilliant. She was social, outgoing, silly, and ticklish. Now we are learning to get through life without our "Perfect Peanut" in it. This is most certainly NOT a new kind of perfect.
8 comments:
Heartbreaking, I am so sorry. Hugs and prayers to you.
So sorry. Seizures really are the WORST! I hope that they can come under control soon, so she can start moving forward again! (we lost a lot of ground with uncontrolled seizures, i hated it too).
Seizures are awful, I am so sorry Emily is having such a hard time with them. We will be praying that they can get the VNS done very soon. Hugs
VNS! VNS! VNS! VNS! SOOOOOOOOON!!!!!!!!! I am crossing my fingers, toes, and hoping with all my might!
I have a student it works wonders with! I have other students it works so so with, but the one... WOW!
Call the neurologist daily and bug the hell out of them complaining of her seizures until they schedule the VNS! :)
(in case you can't tell, I'm a little pushy) :p
I am so sorry to hear this and to see it. I know she's been through a lot lately (as have you!). It worries me that she's on so much medication and I am wondering whether some of the new stuff is due to that. Also, have you been weaning her from anything? Early on in Sophie's "history," when she was on and off of so many drugs, I felt it took an enormous toll on her with little to no benefit. It was only after being slowly weaned from all the medication that she was "better." Better meant seizing a bit but profoundly better in every other regard. Please call me if you need to talk about anything, bounce ideas off of me or just kvetch and cry.
Sara,
I am so sad and my heart is aching and breaking for you sweet Emily. Oh I hope something can be done soon. There are times I look at her and see Annabel, you are right the have such a resemblance. Please keep us updated. I am bad about going on FB but I seem to look at her blog several times daily. Trust me you don't have to make it neat or clean for us on the blog, we just want to know how she is doing. I am praying your birthday present is answers to her seizing.
I just read your last few updates. First of all, I am with you - I tend to hide from my blog - and all others - when I'm feeling crappy. So, you are not alone there.
And all these seizures are breaking my heart for you and Emily!!! We could put a man on the freaking moon, but can't stop seizures? UGH! I have no personal experience, but that doesn't stop me from hating them for you! I can feel your pain in your blog and I hate that Emily has to have this challenge on top of everything else.
I hope that the VNS can bring some much needed relief for her and you! There is nothing worse than watching your child suffer and not be able to stop it.
Many hugs, my friend. Many hugs.
~Christy
So sorry to hear she is going through this :(
Post a Comment