Friday, October 30, 2015
Writing a book and a swollen foot
Ruth has been really busy on Brownie badges. She is trying to get all the individual badges that she can before the end of the year (when she moves up to Guides).
Wed 21st: We finally bought ourselves a proper compost bin. Hezekiah was my helper today in putting it together.
Thursday 22nd: I had to laugh when I heard that Ruth was letting Asher feed her. And take a photo to document it for future laughs. :-)
This evening I headed in to the Champion Centre for their annual "pamper night" for the mothers.
What a special evening to spend with other mothers who are experiencing similar challenges and to be spoilt a bit. I especially enjoyed the wonderful massages (I got an hour long back massage). And we all came home with some other treats too.
I got home to the news that Asher had had a seizure while I was out. I found a little note on my desk from Ruth though: 3 1/2 minute vacant seizure at 7pm. Eyes up and right. Head pulling right. Not breathing well.
Thank you Ruth. Your care warms my heart.
Friday 23rd: Asher had so much fun with the speech therapist today. These rings are a favourite toy for Asher, but Carol found a new way to have fun with them today. Balancing them on her head and then letting them fall off. At one point Carol asked Asher if she wanted to put one on her own head. Asher had a very decided "no" reply. ;-)
We have been doing a salicylate challenge this week and so I was especially pleased when I saw that our local (30 minutes away) Countdown had "free fruit" for the children too. It was especially helpful to keep Asher occupied with an apple.
Saturday 24th: Rachel got bitten by something on Thursday afternoon while she and Brendon were fixing the fence (where Shadow had been sneaking out). She has again reacted so badly.
It's not only the swelling but the pain too. She has been taking antihistamine, but she just don't seem to work very well for her. These photos taken on Saturday.
Saturday saw Asher having a rough day too. She was woken at 6am by a short 1 minute Tonic Clonic. She then had a 2 minute Vacant seizure at midday.
At 1:45 she had an 8 minute Tonic Clonic seizure during her nap time. I am so thankful that I noticed this seizure. We have a great video monitor now that stays on all the time. The seizure didn't start off with loads of movement, but I could just see something about the way that Asher was lying, that made me know she was having a seizure. I actually thought it was a Tonic seizure (stiff only) when looking on the monitor. When I got to her I realized it was Tonic Clonic (stiff with relaxing - so jerking in appearance), which just grew in intensity. I was so glad that Ruth had thought to call Brendon in from the garden. At one point I really needed him to take over with the encouraging words, as I just needed to have a little, quiet cry. There were times when the seizure was jerking her little body so much, that the emotions just get too much. It just breaks my heart.
Thankfully she had a good sleep afterwards and was up playing happily in the afternoon. She didn't look great though and had coughed a few times. So although there was no fever at that point, we thought she may be coming down the the cough/cold that Rachel and Ruth have had the last few days.
At 7pm she had a 6 minute vacant seizure and we noticed that her temperature was up. It was incredible to realize that it was a year ago exactly that we were in Germany with her experiencing almost the same thing. Illness and a cluster of seizures going with it - on exactly the 24th of October - thanks facebook for the reminder :-).
Thankfully from our previous run of seizures, I knew the doc was happy for us to up her one medication very slightly, for a short period of time (just a couple of days) and so we increased her dose this evening and gave her a bit extra for a couple of days. We praise the Lord that this helped her body have a break from the seizures and allow her to just focus on getting over the cold.
Tuesday 27th: Rachel was able to get her St John shoes on today, but missed out on most of her ballet practice as she could not put her ballet shoes on or go onto her toes. She did at least get to practice the group dance, so that was good.
I had to smile when I saw how Hezekiah climbs into his bed.
My little smiling monkey.
We are all seeing that Asher does tend to react really well to things holding her and perhaps making her feel more secure. So we have swung her in a thick sheet, they have gotten tight material tunnels for her to wiggle through, used weighted blankets during singing, and the bean bag has the same effect here.
And another one of Ruth - enjoying the African dress up things.