Wednesday, July 8, 2015

Seizures, sickness and snow

Sunday 5th July. Kids helping Dad fill the woodbox.
Asher just checking that the gate was closed. If it wasn't she would have been out in a flash.
Yesterday I started with flu symptoms. It's the first time in a very long time that I have felt so ill. I think with Brendon being off for 2 weeks now, my body just said "enough is enough". I have really had to take it easy - which has been very frustrating for me.

On Sunday evening around 6pm Asher had a vacant seizure. Again we missed the start as she stayed standing. It went on for 5 minutes after we became aware of it (and not breathing well for the last 2 minutes). I had the extra medication ready and was just about to give it. We was so pleased it stopped when it did and the meds were not needed.

We were thrilled that she almost made it to 2 weeks without seizures (just 1 day short).
These photos were taken while the others were out at church in the evening. Asher enjoying her balls again. It's been ages since she used that dark spot for kicking - but today got back into that. She did at least alternate between kicking and throwing. She is enjoying her repetitive games more lately. And I was far too tired still to even think of trying to do something different with her.
Monday 6th. Thankfully Asher had a good night. She had some fun outside with Dad this morning. This photo was taken just before 10. Brendon managed to cut the grass this morning (although he had to jump start the mower). There were so many leaves about.
Hannah did a great job in helping rake and collect the leaves (and bit of grass) afterwards.
Asher was inside while Brendon cut and then headed out to join them again. It was during this time that another seizure started. It was a vacant one although she did have flickering on her eyes for most of it too. It eventually lasted around 25 minutes. She got her extra meds at 8 minutes and again at 18 minutes. It's such a hard thing with these meds.
It is the most frightening thing to watch a seizure just keep going (especially when it heads over 5, 10, 15 and then even 20 minutes) and so we know we have to do all that we can to stop it. Status epileptics (where the seizure just won't stop) has come to mind a few times with these long ones and it's a very scary thought.
Unfortunately - with having had 2 doses, the side effects are more likely to show and they did today. She just could not get to have her normal "post seizure" sleep, and she was "drunk" for at least an hour. She is so restless and won't sit on your lap or stay still. She tries to move around but keeps falling over. So we got the camping cot out and let her stay in there with lots of soft toys. Then she could at least try and walk / move, and when she fell (as she kept doing for at least half an hour) at least it was soft and she couldn't hurt herself. It also seemed to help her to have the sides to hold onto - and not need people. She doesn't like people touching her or trying to help her in this time. So it's very hard emotionally for me. I was very pleased when she finally went down for her afternoon nap and had the good sleep she so needed.
Tuesday 7th: Although I am not quite over the flu, I just had to get some baking done today. Rachel is the one that normally gets all these things done for me. Today has made me especially grateful for her efforts each week and even more thankful that she enjoys it so much. It's just a chore for me. ;-)
We took the kids out for a drive in the afternoon (as Brendon needed to pick something up from the office). It was only 2 degrees at 4:30.
I had my camera with "just in case" and enjoyed watching Asher have fun with Hannah's hat. She kept pulling funny faces at the camera though. ;-)
This was a cute one of the two of them.
Wednesday 8th: Asher's new "spot" for doing her puzzles is on the castle.
Asher had a follow up appointment with her neurologist after lunch, so mid morning we headed off to town. Thankfully the Love's watched Hannah and Hezekiah for us so that they didn't have to spend all the time in the car and at the hospital.
There had been talk of snow overnight and although we didn't get any, the mountains around Christchurch did. It was rather beautiful seeing them when we drove in.
And a note - we turn off this highway for Champion Centre on Friday's at that "ball" on the left. Ruth was so pleased to get to see it "lit up" when they went to the airport on Saturday morning. She was just too slow in getting her camera out for a picture of it. I am glad she got to see it though. It must be really pretty.

We got a few bits of shopping done before the appointment. The appointment itself when very well. The doc was very pleased with the improvement she has had over the last month, so for now we are just sticking with what we are doing and not talking about any other medications yet.
The photo above is of the mountains around our place on the way home. There was still a lot of talk of us getting a good amount of snow overnight (more on that in the next post).
We bought extra hot chips while in town and that ended up being dinner. I had to plan things carefully as our stove is in the dinning room at the moment (along with all the other kitchen and laundry equipment). While we were out this morning they came in to strip off all the old vinyl that had bubbled after our "flood" a couple of months back. So we had all of the stuff in the dinning room before we left this morning, and it can't go back in until the new floor is in - which should, Lord willing and snow permitting, happen tomorrow (more in that in the next post too).

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