Sunday, October 26, 2014

Our last days in Ottersburg and Asher's seizures

Graham and Aleks live in the top left apartment. A lovely spacious 3 bedroom, 2 bathroom home.
After much discussion on who would join Aleks and Michael and the Mother Centre for a late breakfast, Brendon finally offered to come with. I was very nervous about driving a tandem (on the front) with Aleks, Michael and Asher behind me. So off we went.
Graham stayed behind to make lunch for the Play Centre where Zophia was, as it was their week to provide.
Asher was getting tired and as we were about to leave Michael needed to feed. So Aleks said she would be fine making her way back home on the single bike and we could take the tandem.
This week we have been chatting to Graham and Aleks a lot about how to deal with her disability (she only has 5% sight in one eye and is blind in the other), and how Graham needs to not try and protect her too much. So this was a good example of it. I was not sure how she would manage (and felt that desire to be "over-protective") - but she was confident that she would be fine - and she was.
So Brendon and I got to ride the tandem. I was glad to hear I was not more wobbly than Aleks (who is so experienced on it). :-) I was also thankful that Brendon quickly realized that it was easier for me if I knew that a turn was coming up. Otherwise it would take me by surprise and I would think we were falling. I also had to remind myself that just putting our legs out we would be stable. It was fun. Thanks so much Graham and Brendon for getting me out there to try it.
I think Asher had a bit of a powder rest on the ride home though and couldn't get to sleep once we were home. So Brendon said he would take her outside for a while. We really bundled her up but she got her mittens wet as soon as she got out there. She just loved the sandpit though and had a ball.
Brendon had the iPod with his current audio book on - so at least he was entertained too. :-)
Below: Going exploring. What a beautiful "back garden" and view.

The wind then picked up so they had started heading in. Unfortunately just as they got close to the house - Asher had a 2 minute Tonic Clonic seizure. I heard the doorbell ring a few times and guessed what was happening. We quickly got her upstairs and comfortable. Once it stopped we had to get all the sandy clothes off and then she had a sleep next to Dad.
So it may have been a combination of a few things that have happened before: A few small slides at the Mother Centre in the morning, being over tired, getting cold (although just her hands were cold), and the fact that it's been 2 weeks since her last one (which seems to be the pattern lately).
Her first one was at 2pm and then at 4:20 she had a 1 1/2 min vacant seizure. Graham and I had gone to do some shopping. I always hate coming home and hearing she has had a seizure while I am out.
It was quite an experience for Aleks to be there. She has epilepsy too and she got quite emotional being there with Brendon and Asher. She told me afterwards that she never knew what Graham goes through. She often asks him to talk about it afterwards - but I think it's just too emotional for him - and now I think she may understand that.
At 5pm she had another 1 min Tonic Clonic. So at that stage - although it would normally be another hour and a half before her evening meds - we gave her one of the meds now. That thankfully settled things down for a few hours.
The photo to the right was after she woke from a nap after a seizure. I went down to give her a hug and she just held on. What a wonderful cuddle from such a precious little girl.
At 1am however she had a 1 min vacant seizure. I noticed her temperature was up and decided to just check how high it was. It was 38.5 and I just decided to rather give her some children's ibuprofen to try drop the temperature. We know from the cluster at the end of August that the high temperature does increase the chance of more seizures.
She slept well till 5:20 and then had another 1 min vacant. Temp was down to 37.5 - so that was good. I decided to give her the morning dose of her meds as it had now been over 12 hours since her evening dose. It does need a bit of time to "kick in" unfortunately - so she ended up having another 2 min Tonic at 5:30 before the meds did their thing and quietened things down.
By 6:30 her temp was back up to 38.5 - so I gave her more ibuprofen to bring that down again.
I didn't get a photo - but on Monday when we arrived we walked
down to the barn to get milk. Asher loved the dog and the cows.
We were all quite shocked and upset when at 12:10 (midday) she had a 1 1/2 min Tonic Clonic. This was the 7th seizure in less than 24 hours. I think we were all thinking the cluster had stopped. We did loads of calling and information gathering to our options. Graham spoke to a number of people at different local hospitals and I even got to phone our hospital in NZ (thanks to Graham's Skype calling that he has set up). I will summarise by saying that it was a very stressful and emotional time for me and I had to really trust that the Lord had all of this in His hands. I was praying fervently that the seizures would stop as Asher would need to be seizure free for at least 24 hours before flying.
During all this mayhem Graham prepared an amazing lunch of venison. The farmer had shot a deer and so this was really "local" food. There was meat left over which Graham transformed into the most amazing soup. I can honestly say it was the best soup I have ever had. Thanks for all your effort Graham. It was all very much appreciated.

Enjoying breakfast together on Sunday morning before we left.
On Saturday afternoon Brendon and Graham headed off to a pharmacy to get us a few things. More ibuprofen (as we had almost used everything Graham had) as well as Belladonna (to try tackle the fever naturally) as well as Hepar Sulph (for our sore throats as well as Asher's). So Asher was highly medicated through the next day - but the seizures had stopped.
Praise the Lord for answered prayers.
We were so relieved on Sunday to be able to be packing and heading home. Not because we wanted our visit to end - but we just wanted to get our sick little girl home. Thankfully now all we had to deal with was her fever and sore throat. Nothing that would interrupt travel plans.
I wish I had gotten some photos earlier in the week when Asher was still well. But we made the most of our last hours together and got some nice ones.
Thank you so much Graham and Aleks for having us. We had a wonderful time and enjoyed getting to know your precious children.

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