Sunday, December 14, 2014

Medication, Wedding and Ballet

The week started with my birthday on Monday. It was lovely to get all the birthday wishes. I was especially thankful to everyone in South Africa who sent their wishes on Sunday (their time) so that I could get them on Monday morning. Thanks all. :-) Brendon would have liked to have taken the day off, but as the other manager was away at a course - it was just not possible. So I focused on just choosing some of my favourite meals. It started on Sunday evening actually with a treat of pizza (gluten free for 4 of us - so a real treat). Then Rachel had made crumble so we enjoyed that treat for breakfast.
I had cheesecake for lunch (pictured above). When I went to fetch something from the kitchen, Asher had grabbed the container and started helping herself. Such a cutie. I was more than happy to share it with her. Then it was roast chicken with roast sweet potatoes (much healthier than normal potatoes but expensive - so another treat) for dinner.
I had to smile when Asher took a toy phone and put it up on the counter next to Brendon and mine. She is such a clever little girl.
On Tuesday morning I took Rachel to the doc to check a sore on her foot that has been getting worse. It seems it may be a verruca (wart on the bottom of the foot). I was very thankful that Brendon managed to come home and watch the others so I could just quickly pop out with her. It was a busy day for me as just after lunch I then headed out with Asher and Rachel to get Asher to her appointment at the hospital with her neurologist.
The other 3 children were pleased to get a visit with the Love's while we were in town and Brendon picked them up when he was finished with work. I dropped Rachel at the Loves on the way home so she could go to St John and Asher and I only got back at 6pm. So it was a long afternoon.
I was so thankful again for how well it went with her doctor. This was my face book update:
On Thursday her new supply of meds
arrived. Quite intimidating.....
Her EEG from last month looks good. She is starting on a new AED but it will be VERY slowly. Only 1mg a day for the first week and slowly building up to 12mg at the end of 2 months (with 60mg being an acceptable amount for her). So as this new one builds up very slowly - she will stay on her other two for now.
Please pray with us that her body reacts well to this new AED. That it helps control the seizures and does not have any side effects for her.

Again it was a really good time of chatting with her doc. He is so very supportive and encouraging and he also wants to keep her on as little medication as possible. I really thank the Lord for this.
What I did not share on fb was the specific chat we had about how we had been trying to see how little of her 2nd AED we could get her on. The reason we did this was because she was on such a high dose in Germany and still had 7 seizures in 24 hours. So we wondered if it was really helping at all.
Did it matter how much she was on? Or would she just have seizures every 2 weeks despite the high doses of meds?
Asher always helps Dad put his clothes away when he gets
home from work and changes. Today she tried his socks on.
So when we got back we tried to decrease it slowly. Long story short - we took it down, seizures increased, we slowly increased it back to her pre-Germany dose. I was honestly not sure how the doc would feel about this all. He shocked me though and said he totally understood. Obviously the medication is not able to keep the seizures away completely (thus the seizures in Germany) but we do at least know that it is helping some (seizure activity increases if her dose decreases too much). He fully understood that I needed this knowledge to give me some "peace of mind" about starting a new AED. I could tell him honestly how much the drugs scare me. He really does understand. This is such a blessing to me. I really thank the Lord for this and the peace that He has given through this difficult time.
Her medication arrived on Thursday and so we started her on the new AED on Friday morning.
Friday saw the school holidays start.
The kids enjoyed playing with Brooke again.
Unfortunately, just after midnight she had 4 seizures. It was great to be able to quickly get on fb and ask for prayers. Here is my fb update with all the info.
Please pray for Asher.
She just had 4 short seizures, right after each other. They were grand mals (tonic clonic) and although she has had these before, it was so violent this evening and really scary for me. Just as you think it's over, it starts up again. 3 times.
I am very thankful the medication we have to give her if they go over 5 minutes, worked so quickly and for now they have stopped. Please pray we all get some good sleep now.
She has a cold (along with Hezekiah and Ruth). Please pray that this clears soon for all of them and does not develop into anything more. So far she does not have a fever, just a runny nose. We don't want her getting another high fever which will trigger more seizures.
Thankfully there were no more seizures through the night and she did not seem to be negatively effected by them the next day. She was just grizzly from her cold as she had been the day before.
It was a wet and cold day though - so Brendon said he would stay home with Asher and Hezekiah (who also still had a runny nose) and Ruth, Hannah and I were the only ones to get to attend Keeneth and Christina's wedding. Hannah has been looking forward to this day for SO long.

What a special couple and beautiful wedding.

Unfortunately on Saturday night (this time just before midnight), Asher had another seizure. This time a Vacant one. Thankfully it only last 1 1/2 minutes. Both Brendon and I started to worry that it may be a result of the new meds. We knew time would tell. As I write this (Thursday 18th) she has not had any more. So we are very thankful for this.

Rachel could not attend the wedding because she had 2 ballet concerts on Saturday. Her and Ruth both had 2 concerts on Sunday as well. As we had too many sick in the home, we didn't attend church in the morning and then Hannah and I went to watch their final concert in the afternoon.
The girls did really well. It's always such a highlight of the year for them. I did get videos of both of them, so when I get time I will try and load them onto Youtube for you to be able to enjoy.

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