Friday, September 11, 2015

1 knee, 3 trips and 5 seizures

Monday 7th. I don't think I have ever posted a photo of Asher having a seizure. This week is seems to fit the post though, as she had 5 between Monday and Friday. We do take photos and videos of her seizures at times so that we can look back at them. Especially when this was all very new. We would be able to watch a video 3 or 4 times and notice different things every time. Now we are quite well trained to noticing a few things quickly. Her eyes (often up and they can either pull to the right or left), the colour of her mouth, her hands and feet (hands are clenched today, feet can be very pointed), legs and arms, if Tonic Clonic are all the limbs moving ect.
Monday's one was at 7:30am. 1 minute Tonic Clonic. It really stood out to me that even though it was so short, she still needs her solid hour of sleep afterwards. It drains her body so very much.
This photo was taken later that morning. Enjoying one of her music videos.
Tuesday 8th: A busy day with dancing, so I was glad Asher didn't have any seizures today.
The dance teacher said that Hannah could do either the Jazz or Ballet and so today she planned to try both and decide which she wanted to stick with. Ruth will be doing both groups - as they are both really below her level. So she has no trouble remembering two different styles.
They happened to be standing close together during the ballet lesson today, so I could get this photo of the two of them.
And then they ended up next to each other during Jazz too.
Hannah decided very quickly that she would rather do Jazz. Her honest reason was "it's easier".
I had watched her with the ballet lesson and I know she is more than capable of doing a good job there. It just takes more concentration and work. We do want her to just enjoy it though - so we will let her do Jazz.
Wednesday 9th:This morning Ruth, Asher and I drove into town to meet Shadow.
A couple of weeks ago a friend shared a video of an epilepsy assist dog and how this dog sensed when the person was going to have a seizure and then sat with her through the seizure. We had heard of epilepsy assist dogs before, but it got me looking into it again. There is a foundation in New Zealand that place Epilepsy Assist dogs, and so I filled in an application to just get some more information. My suspicion was right, and Asher is too young. A lady from the foundation called me though and we had a great chat.
She explained that they only take applications from the age of 14 so that the person can be fully involved in the training of the dog. She did however encourage me to look into getting a dog ourselves. So that got us into looking at Labrador and Retriever puppies as well as trainers in our area. Both the trainer and the breeder that we contacted, warned us about the work of a puppy, and the fact that Asher is still very young. Within 6 months the puppy would be so much stronger than her. It helped us be realistic about what would be involved with getting a puppy and I realized it was not a good idea. The breeder however (Jess), asked if we would be interested in having Shadow, the mother of the littler she is currently selling.
I was amazed. This really felt like an answer to prayer. When talking to the trainer about the challenges of a puppy, I expressed how in an ideal situation we could get an older dog, that has had good "basic training" but is through the puppy years. Who would ever give up a loved family dog though, that they have put so much effort into. So I was literally in tears after reading Jess's message. We spoke later on the phone and she said that even if it didn't work out between Shadow and Asher, she would help us to try and find an older dog for Asher.
So today's trip was to see how Asher and Shadow got along. And as you can see, Shadow is a lovely relaxed dog and was very calm and relaxed around Asher.
Ruth even got to take her out for a little walk.
And so we started making plans for us to get Shadow. We didn't realize Shadow had already weaned her litter, so we could make plans to pick her up on Saturday already.
How exciting. Although sad for Jess. She spent a long time searching for exactly what she wanted before she found Shadow as a puppy, and has had her as a special part of her family for almost 5 years (Shadow will be 5 in December). So I was that Jess posted this comment (on the first photo above with Shadow and Asher):
Going to be ridiculously hard to say goodbye to Shadow but I know she's going to make such a huge, huge difference in little Asher's life. Couldn't ask for a more perfect home for her with a family of 5 kids to play with all day and I think she'll be a perfect dog for them as she's such a "mother" of a dog and so gentle. Breaking my heart but happy tears!
Although Shadow is not trained as an Epilepsy Assist dog, the main thing that these dogs are taught are to do certain "tricks" when the person has a seizure (be it ringing an alarm or fetching medication ect). In our case - we hope to be able to train Shadow to call someone if Asher is having a seizure. This will in time give Asher a bit of freedom from having me follow her around all day. I am sure she would prefer Shadow to follow her to the toilet or outside for a play - rather than me.
Some dogs do learn to sense when a seizure will happen, but this is not something that can be trained, but is just something the dog may pick up. So we have as much chance of Shadow learning to do this as any other officially "trained" dog.
Asher's messy hair after a nap.
Asher had a seizure on Wednesday at 1pm. This time a vacant 1 minute one. I had mentioned on Monday her need for a sleep after seizures, so today she changed things up a bit and didn't sleep straight away. It wasn't long till her afternoon nap time though, so at least she did get a good sleep then.
On Thursday morning we headed into town again to take Brendon to the hospital for his knee op. He had a miniscal tear repaired.
It took a bit of time to get a referral from our doctor to the specialist, but once we had contact with the specialist it all happened rather quickly. Brendon had a MRI scan done on Wednesday evening 26th August. He then had an x-ray and saw the doc on Wednesday 2nd September.
ACC then had to approve the operation, and we got their approval on Monday. So when the surgeon's rooms called to book Brendon in for Thursday, we were so pleased with how quickly it got organized.
You can see the tear on these first two photos. No wonder it was so painful.
And this is the last photo on the page that they gave Brendon. Looking much better.
I was so very thankful that a friend's husband was able to bring Brendon home in the afternoon as Asher has a seizure at midday. I was thankful we were home and not trying to hang around in town waiting for him. Again just a 1 minute vacant one. She slept a bit, but managed to wake and have a bit of lunch before going down for her afternoon nap.
Unfortunately she had another one at 5pm. Again a 1 minute vacant, but this time her eyes were pulling to the side as well as her whole head.
That brought it up to 4 in 4 days and I started wondering if a cluster was going to start. It was frustrating to not have her Clobazam as her "cluster stopping" medication as she has had to be on that daily for almost a year now.
I was brought to tears in the evening when I posted an update on facebook, asking for prayers for the night. A paramedic neighbour wrote to me and mentioned that she was on duty with the ambulance through the night, and that I must call if we needed them. It was such a blessing to have this reminder of the fact that we are surrounded by people who care and who are supporting us through this. Praise the Lord, she had a seizure free night.
Thankfully the pain medication they put into Brendon's knee worked really well and he didn't have any pain for almost 24 hours. The strapping that needs to stay on for 4 days is really tight though, so he can't bend the leg at all. No worries, with a leg propped up he was still fit for bible stories.
As Ruth had already travelled into town twice this week (and she struggles with motion sickness), Brendon offered to travel in with Asher and I to Champion Centre on Friday. The morning went well and then while we were outside with the physiotherapist at 11:45, she had a 1 minute Tonic Clonic seizure. Thankfully she was pushing herself in one of those little cars and just fell sideways on the side of the car. If she was on any of the other bikes (that she had already ridden) or at the top of stairs, she could have hurt herself when she fell.
This was the first seizure Asher has had while at the Champion Centre. I was again reminded of the wonderful support we have around us. Asher had a good long sleep afterwards and we just waited a bit before heading home. It was nice to get to chat to a few of the ladies while we waited. I also called the hospital just to get some input from her neurologist (and make sure they didn't want us to go to the hospital before heading home). He suggested we give her a small increase in her Clobazam for a couple of days, and if by Sunday they are still coming, we could give another small increase.
Then once they stop, we can slowly wean her back onto her daily dose. I was really comfortable with this plan and was glad we could do something to try and stop them.
Thankfully the 5 in 5 days ended up the total for this week, and we had a quiet weekend with no more seizures.
Left: Here you can see how much strapping there is on that knee. The surgeon has booked him off work for 2 weeks. He will see the surgeon on Wednesday 23rd to make sure that everything is going well.

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