Tuesday, April 23, 2013

VNS update

London has now had her VNS turned up a few times... I felt like things were going well with it even though we weren't seeing significant seizure control. She seemed to be a little happier and alert and I'll take small improvements like that any day! But after this past appointment to turn it up, it seemed that she was right back to grumpy London who wanted nothing but to be held all day, every day. I thought she must have an ear infection and it turned out I was almost right. Her right ear was a bit red, and since 'a bit red' ALWAYS turns into an infection for London, we get her on antibiotics for it right away. Typically, when on antibiotics, kids get diarrhea, but not London! She had been backed up before and the meds just made things worse. After I got that problem taken care of (thank goodness for PRObiotics!!), she still was grumpy so I called in for another Rx thinking the first one just didn't get rid of the infection entirely. And when THAT didn't work, I took her back in to make sure it wasn't still her ear. And it wasn't. So we were back to no answers... until I remembered that the VNS leads can cause pain up near the ear. I figure this is the problem...

We were supposed to go to the doctor today and I was going to see about turning the INTENSITY down, but turning the FREQUENCY up to see if we could get happy London back, but as soon as I put her in the car to leave, she puked everywhere. And most SN moms can relate to this: when our kiddos puke, there's no grabbing a wet wipe and getting on with the day as planned. I reluctantly rescheduled our appointment and London slept for the next several hours, puking once in her sleep. I was able to get a few things done around the house, but I look forward to our appointment so I can talk to the doctor about how the past month has been going.

I'm exhausted. London has also been waking up several times each night- another side affect of the VNS is insomnia (which is just now become a problem) Sometimes she wakes up crying out in pain, sometimes she seems hungry, and sometimes I think she just wants to have someone in her bed with her (that one still shocks me, as she's always been one to kick and push me OUT of the bed)... I feel so bad for her because if she can't sleep and she in pain, I'm sure she has just cause to be fussy and sad and irritable... but sometimes after hearing her fuss all day nonstop unless she's being held really wears me thin mentally and emotionally.

I feel like this past month has just been completely draining. After 5 years, you might think that a mom like me is totally at peace with their child's disabilities... but I feel like I have to re-accept it every single day. My heart breaks all over again each morning when I wake up. 

Homemade Maple Brown Sugar Oatmeal Packets

I've come to learn that, since I can't 'fix' London, it's sometimes theraputic to just create. And since I'm completely addicted to Pinterest, lately I've been trying things that I see on there... The only problem is that sometimes when I try things I see, they don't measure up. So I do things my way... Which is how I came up with this recipe. You'll have to forgive me, I don't have the links for where I found the two recipes that I altered/combined... But I had tried both of them, and didn't quite get what I wanted so used parts of both of them to come up with something that my kids and I would like. And sorry the photos aren't that great- Ain't nobody got time for that. :)

1 cup brown sugar
2 tblsp maple syrup
1 1/2 tsp salt
Quick Oats (I use 1/2 cup per packet, and I think I got about 11 packets per recipe)
Powdered milk (I use 1 tsp per packet, but honestly this could probably be totally optional. I only used it because I had purchased it for another recipe and figured I might as well use it. I haven't tried it without the powdered milk yet.)
You can also sprinkle some cinnamon into each packet; completely optional.

 Start with your brown sugar in a shallow dish, add the syrup and the salt. 

  (Ok, so I didn't actually measure the salt, I just threw some in there.)

And for those of you who like pictures of ALL the ingredients, here's the salt that I left out of the first pic.


 Mash the crap out of it all with a fork. It will be lumpy, just keep mashing. You can take a break if your hand gets tired. I did.

Oh yeah, and here's a picture of the baggies I used. In case you needed to know.

After you have your sugar mixture...well, mixed, put a half cup of quick oats into a baggie.

 Then add 4 tsp of the sugar mixture to the oats.

 Add 1 tsp of powdered milk... Repeat until you've used up all your sugar mixture. Seal 'em up for storing. Add as much or as little hot water as you like and enjoy!
*You will have to mash up the clumps of the sugar mixture when you make them*

And don't worry if this happens while you're making up your packets. Just eat those little crumbs and get on with it. We wouldn't want to waste anything.
 And you can just go ahead and eat this too...

According to my MyFitnessPal app, these are about 231 calories per packet... which is more than the ones I was purchasing from the store, but the servings are bigger. And who cares.