Wednesday, May 01, 2013

A Lazy Day...

So it's Wednesday, and London is out of school on Wednesdays so that means that we have a lazy day midweek. I usually have a hard time on these days because I feel like I have so much other stuff that I need to do and can never get around to, but I'm not complaining today! The past few weeks have been extra... something. Stressful? Exhausting? Something...I haven't been getting any good, restful sleep and with so many sick days and appointments, my routine had been way off. I feel like I'm going through the days with lead feet, and simple tasks like making lunch sometimes seem insurmountable. I have been short-tempered and have had headaches on a daily basis. I thought I was getting sick but nothing points to any sort of virus or infection. And no, I'm not pregnant. lol

We took London back in to the doctor for her re-scheduled VNS appointment and after discussing how she had been acting for the past month, we decided to go ahead and turn down the device to a lower setting and leave the frequency at which it turns on the same for now. I'm desperately hoping to see results. Last night was the first night in a long time that she didn't wake up multiple times with either seizures, pain, or just general unrest. I woke up and thought something must be wrong but other than being a bit more sleepy than usual today, she seems ok.  We also had to go for her routine blood work the evening of that appointment and yesterday the doctor called me with the results; everything looks fine apart from her Depakote levels being a bit low. Depakote is one of the meds she's on for seizure control, so the level was not normal; we possibly forgot to give her the Depakote that morning.

So, at the moment, I'm sitting with a sleeping London in my arms enjoying a movie with Kannon. Just before she fell asleep, London was looking right up at my face, her eyebrows ever so slightly furrowed, as if she was concerned. Her eyes seemed to be searching for something, it was like she was trying to silently communicate an important thought to me... she was clear and focused, something that rarely happens, especially for such an extended amount of time as this. How I wish I knew what she was thinking!

Sometimes it's like I can look at her and see an outline just under the surface, of who she SHOULD be--- a care-free, energetic, creative, curious, active little girl with crooked pigtails, skinned knees, and an infectious giggle--- much like the way I can make out the outline of her VNS device just under the skin at the left side of her collar bone...

1 comment:

  1. I wish I could come over and give you a break for a few hours....heading to primary's today though so that's out. I ended up going on prozac for my extreme stress and daily headaches and it has helped considerably. Apparently if you deplete your serotonin levels dealing with constant stress it can cause those types of problems. Not a depression per se but just not enough reserves to deal with everything. As to what you saw in London today...that wasn't who she SHOULD be...that was who she IS. The outside is just a shell...unfortunately it's a shell that doesn't work very good for her but SHE is in there. I'm betting she's picking up on your distress of late and that may be what she was trying to communicate. A concern for her mommy that just seems worn down to her. I know that as much as we try to keep the weakness from being visible to our kids that they see it....yes even the "special" kids. Mikey will feed off my stress levels or my sadness and project the same feelings right back at me at times. He may not be able to outwardly express his concern or even what he is feeling from me or within himself but he can sure mirror it rather clearly. All I can do is offer you hugs, love and prayers Danielle. I'm thinking about you guys all the time.