Sunday, April 5, 2015

Camp, car and eclipse

Monday 30 March - Ruth's lego creation this evening.
Tuesday 31 - I was very thankful that Brendon had taken today off to go with me to Asher's neurologist check up. Also thankful that we got out to the car ahead of schedule as we had a flat tire. I would not have enjoyed having to do this on my own.
So Brendon, Ruth and I headed off to town. Brendon also had an optometrist appointment (making the most of a day off and a trip to town). He will be getting glasses to wear all the time now. Not very strong - but hopefully enough to perhaps help reduce his headaches. The last ones he had were all behind his eyes (the reason we thought to make this appointment).
The appointment with Asher's doc went very well. I had gotten myself ready for the fact that we may be starting yet another drug. So I was thrilled when he suggested we just look at increasing the dose of one of her long term AEDs. She has been on it for over a year now and she has been on the current dose for 7 months.
It was a blessing to see that even though the most recent drug "trial" resulted in Asher going off her food for 2 weeks in March - she still put on 200g over the last month. She is finally 12kg. :-) So she is probably due for an increase in that AED - as the per kg ratio is much less than when she went onto this current dose.
This year I have started giving the doc a graph of the seizures
that she has between visits. (y axis being the length of seizure)
I also chatted to the doctor about the fact that of the last 12 seizures, only 1 was in the morning, the rest being later afternoon. With her other long term AED, she gets 1/2 tab in the morning and 1/4 tab at night. My suggestion was making it 1/4 tab 3 times a day. I knew they didn't normally do 3 doses a day as the lunch time one was just a pain for people and often forgotten. I knew I could be diligent enough to give it to her - and wondered if getting that extra at lunch time might help giver her more "cover" and help her get to her evening dose. He said he thought that was worth trying. He even suggested we do that first for a couple of weeks before increasing the other AED. So again it's in our hands. We will try splitting the dose first and if we feel there is not enough improvement with that - we can then increase the other one. He has given us the guidelines on how much we can move to (with 2 increases available - just taking it one step at a time).
Wednesday 1 April and children photo time again. Rachel got caught by a April fools joke today. Her St John leader "announced" that she was leaving. I found Rachel crying in her room. I told her about April's fools day and suggested she wait till tomorrow to see if it was indeed true. Apparently she was one of many children who were in tears. So she wasn't the only one caught. ;-) And the leader felt bad, not realizing how much it would upset the kids.
Thursday 2 April was a busy day. On Wednesday Brendon had a 1/4 of his tooth break off. I managed to make an appointment for Thursday evening so that he could go after dropping Rachel off at the St John camp. Well, as I brushed my teeth Wednesday night, my replacement filling (that was fixed just over 2 weeks ago) fell out! So plans for today all changed. I took the girls to Brownies (instead of fetching them) - so Hezekiah got to come with and have a little play before we left.
I then took Rachel to the camp and took the dentist appointment. Brendon has an appointment for Saturday afternoon now - as his at least does not cause pain. Mine however - is so painful - I knew as soon as it was out because of the immediate pain.
Rachel realized on arrival that she would have to change into her uniform. So we were pleased we arrived before the stated time. These are a few of the girls from her bunk room. She has been looking forward to this training camp for so long. She was rather nervous on arrival - but I knew she would have an amazing time.
Brendon had Friday off work, which was nice (as he was working on Saturday morning as well as on Monday).
Saturday 4 April. Brooke has been visiting more this week with the school holidays. Asher helped herself to a story today. :-)
Brooke is very patient and picks her up when she comes and says "hi" and "up".
When Brendon got home from his morning of work, he went to have a shower and Asher joined him. I sat outside the shower as a "backup" and today it was needed. I heard him say "Asher?" and then immediately he said "Belinda" and I knew. I quickly got her out the shower and got a towel over her. It was a vacant seizure and lasted about 2 1/2 minutes.
She didn't breath wonderfully through it and went blue around her mouth. She had her hour nap with just the towel wrapped around her. It was almost an hour to the minute that she woke up and was immediately ready to play.
We are thankful that she had a nice 8 day break since the last seizure.
I had to smile when I spotted Hezekiah playing in their "truck" with Shadow (I just couldn't get her in the photo). He has worked out how to move the chairs forward and was behind the chairs.
Ruth reading "The Book with No Pictures" to them in the evening.
Brooke had told the girls about the "blood moon" on Saturday night. Ruth did a bit of research about it and was disappointed we said she would not be allowed to stay up (till after midnight) to have a look. She did take this photo of the moon before she went to bed though. Not bad for her first night photo.
Brooke's mum is an amazing photographer though. This was one she took of the moon. Isn't it just stunning?
And then one of the eclipse.
Thanks for sharing your stunning photos with us all Val.
Sunday 5th April: Asher loves putting this little cap on sideways or backwards. It looks so cute.
Making sure we get back into the habit of these outings..... Hannah and I headed off after lunch. She enjoyed an ice cream at the tea rooms. We had a good time of chatting too.
Always fun to climb up on the sheep. :-)
I was glad we had gone out early as Asher didn't sleep very late and at 2:30 she had a 1 1/2 minute Tonic Clonic seizure. I was glad I was home when it happened. It's not that Brendon can't handle it fine on his own - but I know what happens if I am not there. It's happened a few times before. The latest example was when I was doing shopping after dropping the girls at ballet. The next week when I did the same thing, I kept wondering if it was going to be the same. I kept waiting for a text letting me know she has had another. It's a strange feeling. I am not anxious or worried about it. It's almost like a reflex of just remembering what happened before. I had the same thing many months ago with Hannah at the tea rooms. So it was nice to not have a repeat of that today.
We had our "main meal" for lunch as we often do on a Sunday, and then Ruth decided to do something different for dinner. I had to smile at the amount of olives that was taken out for just 3 of them. A nice variety too. :-)
Sunday night play time with Mum again. She is very determined with these "build and break" games (these shapes and the lego). Once she takes something from you she will hold it for you to look at and you have to acknowledge her with a "mm" or "yes" before she diligently takes every every one apart.

1 comment:

Unknown said...

Hi belinda
Seeing ruth is into Lego I thought I'd tell you in case you're not already aware of it. Toyworld hosts an annual lego building competition, all entries brought in store receive a free small lego set.
The younger children always enter for the free set.