Sunday, August 13, 2017

Ride, relax, sort and stabalize

Mon 7th: A rough start to the week for Asher with a 1 min TC today at 3pm. We had just collected the children from school and it happened on our way home. I'm glad it wasn't just a few minutes earlier when she was running down to the car. She picks up such a speed and it would have been a nasty fall. So I'm grateful it was just those few minutes later.
Tue 8th: Last Thursday, right at the end of Rachel's ballet lesson, she hurt her foot. She iced it a lot of Friday and it was feeling fine. She had a busy weekend and it didn't worry her at all during the St John competitions (with the drill and Colour Party). Unfortunately, when she did her first pointing exercise this evening - all the pain came back. She saw a physio on Wed and it seems it's only when she is in her extended point with that foot - and mostly when it's weight bearing. So the advice is 2 weeks rest. Her mock exam is in less than two weeks time. So we have a foot injury and missed practices again, just before exams. Her exam is set for the 28th, less than 3 weeks away now.
Wed 9th: Asher was back at preschool today after 7 weeks away. She has quickly adjusted to her new EIE and I look forward to her catching up on some of the things that she has "lost" over the last couple of months.
It was great to see her quickly back to enjoying the bikes. She is going to love being back at preschool, and I am going to really enjoy the much needed "time off".
Thu 10th: Even that first morning out seems to have helped energize me. When her carer came around this morning I even had the mental energy to sort babies clothes. I got them into 6 different size piles and allowed Ruth to choose some clothes from the three smallest piles for babies "first outfit". We have no idea how big she will be, so it's good to have a few choices out (it feels like absolutely ages since we had a baby in the house). Then the rest got bagged, tagged and boxed. They will live in the garage for now and then once the earthquake repairs are done, we can start looking at actually setting things up for her arrival.
Asher was singing one of her favourite songs this afternoon "I've got a teddy bear". I quickly found a doll for her to use as the teddy bear to encourage her to sing the whole thing. Such a cutie.
Ruth got motivated by my sorting today and decided to start sorting through a box of things that had been taken off the bookshelf months ago. She managed to leave a smaller box for me to sort and a number of things got thrown away and put in recycling. I didn't quite have the energy for that today. It's a box that I know I still need to get to within the next couple of weeks.
Friday 11th: Wonderfully Asher had 3 days without seizures. It's gotten to the point where I actually just forget about when the last one was and so when she had one today at 6:45am, it felt like we had enjoyed a bit of a break.
Unfortunately she was jerking so much afterwards that it took her a good 20 minutes to finally fall asleep and rest.
Saturday 12th: She found this beanie in the washing and looked so cute with it on.
Daniel came for a visit this weekend. It's now a set routine for the younger ones for them to all head up to the park on Saturday afternoon. Hezekiah got spoilt with a lift home today.
I was then spoilt this evening at the Value event run by the Equippers Church in town, for female carers. I enjoyed back, foot and hand massages, a facial, got my nails painted and enjoyed their lovely snacks
 I missed it last year, so was pleased to be able to get to enjoy the special evening out this year. What a treat. And so good to catch up with other mothers, some I have met before and others just new people you meet as you wait in line for activities.
Sunday 13th: This afternoon Daniel helped stabilize my computer cabinet. We bought it 2nd hand almost 10 years and I have been very nervous about moving it for the upcoming repairs. It's been patched up with nails and glue over the years, but it was far from stable. So today it got a big back board put on, and it was pulled straight for the first time in many years.
We had some board in the garage, but it wasn't big enough to do in one go. So he did the bottom section (with that little extra bit) first and then did the rest of the top in another piece.
Thank you so much Daniel.




Ruth decided to do some flower arrangements today. The daffodils were just too pretty to ignore.

Sunday, August 6, 2017

Competition fun

Saturday 5th: Ruth got them making paper planes this morning. They had fun seeing whose would fly the furthest. Some good flying happened.
Hannah and Ruth off to a birthday party this morning. They both really enjoyed making the birthday cards. It's always fun to see what creative things they will come up with.
While the girls were out, Hezekiah watched "Home Alone". We had been lent it by a friend and the girls had wanted to watch it in the evenings while we do Ruth's hair. Hezekiah goes to bed an hour before them, so he had missed watching it. Brendon and I had so much fun watching Hezekiah's expressions. Eventually he looked at us (I think to judge how he should react) and as we smiled and laughed about the things, he realized it was not meant to be scary. Rachel had the same reaction I have to the movies though, and she now understands why I never taped it for the family to watch. It comes on TV every year around Christmas and Ruth has asked that we tape it before - but there is just that something that I don't enjoy about it. And Rachel fully agreed.
She said it won't be watched in her house. :-) The others all thought it was loads of fun though.

Hezekiah has been asking Dad to do some "practice" with him, so they headed out for some fun this afternoon.
Special times together.
Ruth's creations from the party that they went to. I made a batch of GF cupcakes for them to take with (as they would be decorating cupcakes at the party). The batch ended up a bit bigger than I expected though, so we have a few extra cupcakes in the freezer for lunches in the weeks ahead.
Such scruffy hair as she often pulls her elastic out.
It was sweet to see Anakin happy to have a bit of a cuddle with her today.
Sunday 6th: At 11:30, just before church ended, Asher had a 1 min TC. Thankfully she fell asleep quickly so Brendon could sit with her on his lap through the rest of the service.

We went to church in two cars today so that I could head off to fetch Rachel after the service. I quickly joined in when this photo was taken of some of the girls from their division in the Competitions.
I was also pleased to be early enough to watch Rachel during their Colour Party exercise.
Such great timing.
Although they didn't place - I thought they did an outstanding job.
These two did come first in their Drill assessment though - well done girls.

Not loads of medals for Rachel this year - but she had a great time. And that's what counts. She is really looking forward to having her restricted license next year as that will mean she can get to all the practices for Competitions. Which will be a great help.

Just as we arrived home Asher was having another seizure. 1 1/2 min TC with a minute of violent jerking afterwards. So a rough day for her. And a rough start to the month. That's 5 seizures in the first 6 days.

Friday, August 4, 2017

A blanket and bumped fingers

Monday 31st July: It's so very special watching Hezekiah with Anakin. Every night Anakin goes to bed with Hezekiah and he even has his own special teddy to sleep with.
Tue 1st Aug: Great to be back at Champion Centre after missing 3 weeks (holidays and then being sick). She had a new drum song today and it was great to see her enjoying the drums so much. Not the best photo - but a wonderful time playing.
I also finally got a photo of her at group music time with the welcome song. Each child gets to play a bit as we sing "hello" to them. It's wonderful watching Asher through this. She has such a big smile on her face and watches the other children as they play with such joy and anticipation on her face.


Wed 2nd: Children photo gotten this morning. Tuesdays and Thursdays are always impossible in the mornings, so I was glad I remembered today.


We said goodbye to Little Miss this morning. Anakin and her have been fighting a lot lately and so we decided to rather find another home for her before one of them gets hurt.
When they came to pick her up this morning her new "mum" just fell in love with her so quickly. I loved hearing Rachel describe the ladies reaction to the children when they got home from school. It made us all feel so much better knowing that Little Miss is going to be loved (and spoilt). She even had a sheep's skin in the basket for her trip to her new home. I heard later that she was already purring as soon as they got home. This couple had to put their old cat down a couple of months ago, so Little Miss is going to fill that gap wonderfully. And I think she is going to enjoy the quieter home - with just 2 people and no other cats.
It was great to have Asher's EIE come and spend the morning with her at home. It helps her to get to know Asher a bit. Hopefully it won't be too long before the paperwork is all sorted and Asher is back at preschool.
At 1pm she had a 1 minute TC. I had bought her this weighted blanket (it weighs 5kg) and it arrived this morning. I was so pleased to have it for her during her nap. She often shivers after the seizure, and so this lovely blanket can help her body feel safe and relax. Often I would try and lie with Asher, holding her and putting as much of my arms weight on her so that she could feel safe and secure. This blanket now does that job - and far better than what I could do.
Playing some Uno this evening. These two have been getting along a lot better latterly and really enjoying playing together (the way they used to before Hannah started school). I am so thankful for this. Hannah wasn't really wanting to play Uno this evening, so I was especially pleased that she did (just to show love to Hezekiah).
It won't be long now before we can stop with Asher's twice daily finger prick blood tests. She has been such a star with this. She says "test" and sits so well. It will be great to not need to keep doing it though.
Thursday 3rd: Asher had a 1 min TC at 9am this morning. I had taken her into the class room at school to try and get her familiar with the room (and more comfortable there). The kids had Jump Jam this morning, so I thought it would be nice for her to follow along with the children. If this is something she is a bit more familiar with (going where other children go - not off on her own) it will help for when she starts school.
Unfortunately just as it was about to start, she had the seizure. So she didn't get to do the dancing with them.
When I picked the children up from school we had our first ever "finger in a car door" incident. I got such a fright and was rather scared about what I would see when I got around the car to Hezekiah. I was so relieved when the finger tips where still on. Just broken skin (not too much bleeding) and a lot of pain. He got such a fright that he bit his lip. We sorted the fingers out when we got home, and he put ice on them, but it was only later we realized how badly his lip had been hurt. I had seen a tiny bit of blood, so guessed he must have bit his lip, but was shocked with how much it swelled.
We took the photo with the straight face so that you can see the extent of the swelling. It was hard to eat with how big it had gotten. He really looked like he had been beaten up. He still had a smile for me though. Such a brave boy.
Getting much needed ice on that lip as well as the fingers. Both the older girls were helpful in guiding me through wrapping the fingers. I was nervous about a plaster - worrying that they may swell (and then the plaster is too tight). Thankfully I found some dressing plaster that I could cut and use and it worked really well. Ruth gave me the extremely helpful instructions on how to wet the middle section so that it didn't stick to the cuts. I didn't do that on the first dressing, and we had to wet them to loosen the stuck dressing. So Ruth helped sort that out and the 2nd dressings worked really well.
Unfortunately Asher had another 1 min TC at 4:30. So a rough day for the little girl.
Friday 4th: I took Asher with to assembly today. I'm hoping that by being around the children more she will get more familiar with the environment. I had her bag of toys with (church toys) to keep her busy in her buggy (and hopefully quiet). I was really thankful for how well she did. Next time I must just sit in a better place so she can see better. She often looked up and listened to the people who were talking (even if she carried on with her puzzles through it). And she loved clapping with everyone else. So it went so much better than I expected. She was pleased to see Hannah at the front - reading about their landform creation.
And she got to clap for Ruth too - who got a certificate today. For her positive participation in class and school wide activities! Well done Ruth.

This afternoon Rachel took a shuttle into town and then got a lift with one of Daniel's brothers from town to their place. She spent Saturday with them and then she joined two of Daniel's siblings who were also a part of Sunday's St John Competitions. Until she has her restricted licence, this is the only practical way for her to get to visit them for a weekend. It worked really well with Sunday's trip. And the shuttle was much cheaper than us driving her in. Good thinking Rachel. I'm glad it worked out so well and they could enjoy the weekend together.
Ruth enjoying some cuddle time with Anakin this evening. Such an affectionate cat with everyone.
I didn't get a photo - but Ruth has had her first hair cut. With us re-doing her braids, the new ones are much shorter than the old. So she finally asked me to just trim them all. It was good to get her used to having her hair a bit shorter. Once we are finished re-doing all the braids it will be a bit shorter still. So it was good to get the adjustment started. And it really is blog worthy - her first hair cut in 11 years!!! Just a pity I didn't get a photo on the night we did it.
In this photo she has some "corn rows" or small "French braids" along the top (I did 6). It made a nice style for a few days - but this photo doesn't do it justice (it looks a bit messy in the photo - but it actually looked lovely and neat). We keep working on re-doing braids. Currently we try do 3 braids in the evening (rather than 6 to 8 on a Sunday afternoon). Ruth has also started undoing some herself - so some nights we get to do 4. It takes a full hour though, so she is very patient with it all. The end is in site though. I'm hoping we will have it all done by the end of September.

Sunday, July 30, 2017

Keto call and pancake practice

Hannah's landform creation that she made with Grace.
Monday 24th: During the night I started feeling very nauseous. This was what Brendon had last Saturday night, ending with him spending the whole day in bed on Sunday. Thankfully it really was just a 24 hour tummy bug. After a week I thought we had avoided it spreading, but it was not to be.
Brendon had headed off to work and although Rachel tried her best, Asher just refused to eat. So I got up to feed her. As I was up I took the kids to school, but by the time I got back home I felt even worse. Thankfully I only vomited once, but I had to ask Brendon to come home so that I could just rest (and Asher could get fed).
Ruth's landform creation that she made with Jess.
Although I felt a little better on Tuesday, Asher and I didn't go to Champion Centre. It was better to just have a quiet day at home. That did however mean that I also couldn't attend my appointment with my midwife that I had planned for on our way home. It worked out really well though, as she was up in our area on Wednesday with a post-natal visit. So she came to see me on Wednesday morning.
We have found a new EIE for Asher, but are waiting for Police Clearance to be done before she can start at the preschool with her. On Wednesday morning however, she came to our home to play with Asher and get to know her. So that allowed me to have time to chat to my midwife which was really great.
On Wednesday afternoon it was Hannah's Student led conference. We were both too emotional though, so we didn't get much done. On Thursday afternoon it was Ruth's turn. I was feeling much better by then and Ruth knew exactly how it all worked, so that went really well. Ruth is doing very well at school. It was nice to sit with her report and look at what she has already accomplished this year, and then what her next goals are. She has already reached the National Standard in Math with half a year to go. It was great chatting to Ruth about how things are done. They can go ahead with work and are not kept to only doing what is official their years work. They are split into groups according to their abilities and progress from there. Ruth still has one group that she could move up to in Math, so I know she will get all the stimulation she needs to keep going.
There is one boy in their class (year 7) who is so gifted with Math that he is already working with the year 11 children. So it was a great afternoon for Ruth and I and I learnt a lot about how she is doing.
Unfortunately I had turned the volume off on my phone but left it in my jacket (which I had taken off) and so I didn't feel it vibrate when Rachel phone. Asher had a seizure while I was out. It was one of those horrible times when she has pain afterwards and it was very emotional for Rachel. She said it was so hard not being able to help her feel better. And then she had Hannah and Hezekiah pestering her for things at the same time. As well as her not feeling great (she got the tummy bug last night - so today was a recovery day for her and she missed dancing). So she had a really stressful experience. I felt so sorry for her having to go through that. It must have been a very real learning experience for her though, to get a glimpse of the complexity of the stress that I am often under.
Friday 28th: Hannah and Hezekiah played so nicely together this afternoon. I always enjoy listening to the different games they create. Hannah was also excited about going to Youth tonight. Hezekiah can't wait till he is old enough to join them too.
On Wednesday evening I asked Brendon to call Asher's dietician. I was feeling too emotional about it all (so knew I wouldn't cope with a phone call) - but was also facing the facts that we may need to stop with the diet. When Brendon described what was happening with Asher's meals (needing either of us to feed her - every time), she was the one that said we need to stop. So it was reassuring to me to know that I wasn't over-reacting. It really is not practical to continue.
It was a terribly hard decision to make though. The diet has definitely been helping to reduce the number of seizures, and so the thought of taking her off, and facing more seizures, was really daunting. And really scary.
I took this photo on Saturday morning. An old Keto recipe with most of the fat left off. It was so good to have her asking for food and happily sitting at the table and feeding herself. The change has made me realize how very hard it's been over the last couple of months. If I think back to before the tummy bug in April, the diet was going so well. She loved all the food and happily ate everything (especially loving her frankfurters, olives and butter). Things just didn't come right after the tummy bug and then throat infection a couple of weeks after that. So we have to just be realistic with what has happened. We can't change it - and we have done the best we can.
Saturday morning was spent getting a general clean done around the house. Asher wanted to help with the fireplace too (knowing exactly what to do from watching me before). She did a good job too.
In the afternoon the older girls came with me to the church's ladies afternoon tea.
We had a laugh this evening when Hezekiah lay down next to Anakin. Anakin immediately decided that Hezekiah needed a bath. He held his head in his paws and licked away. It sounds like this often happens when Hezekiah goes to bed at night. Such a special relationship between these two.
Sunday 30th: After a change of plans Daniel came and joined us for the day today. Asher had a seizure at 5pm (1 min TC again). Once she was sleeping I asked Rachel if she wanted to make pancakes for dinner. We haven't made them in quite a while and Rachel was very pleased with the suggestion.
I got the cooking started and then they asked me to flip the pancakes. Which I then did. This was enough to get Daniel wanting to give it a try. So after giving some tips, I could leave the cooking up to him.
I was pleased to get a photo of one of the flips. He did a really good job. I can see this will be a regular meal with any future visits. :-) Although instead of making double my Dad's recipe, I think it will be at least tripled. They were a hit.