Blood, book, bees and blossoms

Monday 12th: After dropping Asher and Hezekiah at preschool, Ruth, Hannah and I headed into town for their appointments at the optomotrist. Ruth went first (as Hannah was a little worried about what it was all about).
Ruth was the main reason I made these appointments as her eyes have been hurting her if she reads for longer than a few minutes. Now that she is at school, there is a reading expectation on her and so she has had to do more reading than ever before. I never pushed her to read as I knew she was very capable. I just thought she didn't like it. Over the years I tried to find different books to try and catch her interest, but never manged to find anything. Now I wonder if it was just discomfort all along. She never pushed herself to the point of experiencing the pain she now gets, but it was obviously never really comfortable for her.
The lady explained that it was only Ruth's high intelligence that has allowed her to keep up. Her eyes have to work 45% harder than others to just get the words to focus. Most children would use so much energy (and brain power) to get the words into focus that there would be nothing left for actual learning. So she has done incredible well over the years. I am so pleased we have finally gotten to do this. Having glasses is going to be such a help to her and hopefully she will start enjoying reading now.
As Ruth's prescription for reading close is so strong, she has suggested getting bifocals so that she can have the proper prescription for distance. Especially in class with looking up and down from her work to the teacher or the board.
Hannah also needs glasses, but more for helping her eyes to work together. She described it as having 2 cogs that keep slipping past each other. Sometimes they align ok, but then for no reason, they just slip past each other. This may well explain her dyslexic type issues with her (for example: reading "was" as "saw"). I had no idea it could be related to her eyes. So I am again so very pleased we have finally gotten this done for her. I am confident this is also going to be a great help to her with her school work, especially with her spacial awareness in writing.
Then it was time to choose frames. Ruth had a great idea to take photos with the sample frames on. :-) They had clear ideas of what they liked and I am so thankful that they are both very excited about getting there glasses (which will take around a week to be ready). And they both look great with them on.

Just as the girls had finalised their choices and the paperwork was all getting done, I got a call from the preschool. Asher was having a seizure. I had told Lynda to call Rachel as she was home, which she did. As it started just before 11:30 (when she goes home), Rachel was just leaving when they called. So instead of going with the pram, she jumped on her bicycle and was there very quickly. The seizure had only been going for 2 or 3 minutes when she got there - so she made good time. Unfortunately it ended up being a long seizure. Lynda got the medication ready and Rachel gave that at 5 minutes.

It was still going at 10 minutes and this was when they called me. It was a bit of a shock for me to be thrown into a seizure at 10 minutes. So we have made a change to the "Seizure Action Plan" that if I am not there, they still call me when it starts. Rachel just wanted to check that she must give a 2nd dose of the medication. So I could talk her through just giving it really slowly. They were also not sure as to when they needed to call the ambulance. So I took a minute to just chat to Rachel and she told me she was breathing really well. While we were talking the seizure finally stopped, at around 12 minutes. I was rather emotional but it was great to hear that everyone there was wonderfully calm. I think it helps that there are lots of other little children around that need to see the adults nice and calm and relaxed. Hezekiah was also a great help for the other children as he was just so matter of fact about it all and so they knew they didn't need to get stressed. It was such a blessing for me to know there was so much support through it.

I had asked that they call Brendon and so he was already on the phone while I was talking to Rachel. He came over and signed all the paperwork and took Rachel and Asher (and Rachel's bike) home. Hezekiah was so sweet - before Brendon had arrived he was concerned because Rachel would not be able to take Asher home on her bike.
It helped me to know the girls were home and Brendon had Asher settled before he went back to work.
Then we were off to the hospital for a follow up appointment for Ruth. We got the blood results from last week and her B12 is much improved. Normal range is up to 600 and her was 1,300 last year. It is 770 now, so still high but massively improved.

She still has inflammation, having dropped from 17 to 15 but needing to be under 10. Her haemoglobin is still low. So the doctor has suggested we do screening for Thalassemia. I was really impressed with how well he described it to Ruth. He gave so much information and was looking at her the whole time. I really appreciated the time he took and how well he explained it. With her having blood drawn last week, we will wait a bit before she gets this next test done.
Tuesday 13th: For a couple of weeks now I read a book with Asher when we arrive at preschool. When I said "book first" this morning when we arrived, it was great to have her jump up onto the couch next to the books and look through a book. Lynda chatted to her about the animals on the pages. Huge progress here which I am so thankful for.
Hezekiah was excited about showing me his bee today.
As well as the caterpillar on the stick. I have so many art photos that I haven't gotten around to posting yet, so perhaps it's better to put them up as they come home. :-)

Wednesday 14th: I finally remembered to get a photo at morning tea today. I was upset with myself for not getting a photo during her music session this morning. It was a real breakthrough. Ali has a new big drum (at least 70cm diameter) and the bean bag frogs were out again. Asher wanted to just do the frog song, but when our frogs dropped off our heads, I made mine drop onto the drum. That managed to get Asher's attention and so she eventually started dropping the frogs on the drum. She had a little pattern going with another activity (I can't even remember now 10 days later what it was), alternating with the two games, and either putting the frogs all out onto the drum, or packing them into their basket.
It was the first time Ali had seen Asher using her alternating pattern, and she said she was happy for me to try and guide Asher into creating patterns like this in future.
Hezekiah brought his new bee hive home today.
Thursday 15th: Rachel was so disappointed this morning. She kicked something in the dark when she got up. She hurt her toe so badly that she was not able to go to work. Thankfully it was feeling much better by the evening and she didn't miss out on her ballet practice.
Ruth also got her ballet exam results and passed with Very Highly Commended. Well done Ruth. Great job.
Friday 16th: I was looking for something different for Asher to play with this morning while Josie was here watching her. I found a few correspondence school puzzles from when Ruth was signed up. Hezekiah enjoyed playing with them too. He decided to turn them all upside down and build white puzzles. :-)
Saturday 17th: Such a cute photo. Hezekiah was playing on the mini when we got up and Asher went to join him while I made breakfast. I love how he put his blanket over her too. They have done this a few times in the morning and I am always so thankful for this big brother's love.
Josie gave us some of her pruning cuts yesterday and I remembered to take a photo this morning. They have already started opening.
Sunday 18th: Brendon has a bit of flu and so stayed home this morning with Asher. I headed to church with the other 4. We had our lunch in the car as we travelled to a shopping centre to get shoes for Hezekiah. He needs good ones for school and church (his current ones have holes) and only when we were trying them on did I realised how much his feet have grown. He needed some good summer shoes too.
Rachel also needed some summer shoes, so she was pleased to get time to look around and try some on. We don't often get time in town to just "shop" like this. :-) The younger ones enjoyed just sitting in the different rides. They haven't been through this shopping centre before - so it was all new and exciting. :-)
It was a great use of the extra hour we had before needing to drop Rachel off (in town) for "visitations". She is going as a leader on another CEF camp (or Camp Goodnews) in the holidays. Today a few of the leaders go and visit a few of the children who are going on camp to chat to them and their parents. Thankfully Rachel was able to get a lift with friends to their home at the end of their day out, and so I only had a 20 minute drive to pick her up in the evening. She had a great day and enjoyed getting to know some of the "new" leaders.
At 6pm Asher had a 1 minute Tonic Clonic. It started while she was in the bath with Hannah and Hezekiah. Thankfully Hannah was watching her and called as soon as it started. Brendon was sitting at the door reading, so was up and getting her quickly. I heard the call from the other side of the house, so was there with a towel as soon as he had her up. I was so pleased it was a short one. Thankfully she didn't have a properly sleep afterwards, and so could get to bed at normal time.

Exam, IP and School visits

Monday 29th August: It was lovely to see Asher bring books for Dad to read to her this afternoon. Previously she would only page through this book quickly (never stopping for anyone to read anything). The only page she would stop at was Humpty Dumpty (her favourite nursery rhyme).
Today, she allowed Brendon to read from every page. Half way through he had to start going really quickly or just doing the first half - but it was still a huge improvement.
Tuesday 30: Asher was up early today and at 7am she had a 1 minute Tonic seizure. Thankfully she didn't need a full hour sleep and when she woke she happily ate her breakfast. She headed off to preschool but it was noticeable today that she was not 100%. She was a bit more rigid and not as caring with the other children. It seems she may have also had a tiny little vacant seizure while on the swing.
She got off and wanted a cuddle and just sat quietly for a little while. After her little rest she was up and off to the sandpit for more fun. On reflection it was interesting to note that we have never seen a deterioration in her behaviour after a seizure before today - but that made me so very aware of how much her behaviour has improved over the last months. Unfortunately she had another seizure at 5pm, 1 1/2 minute Tonic. Thankfully it was just the two though and she had a good sleep that night.
Exam day for Ruth today. I had to fetch her from school at lunch time so that she could shower before we left at 1:20. With her hair wet it made it much easier to get it into that bun. After we had taken the net off I realised I should have taken a close up photo of her hair. It looks so good. We put a huge effort into getting it all tightened over the last month in preparation for today - and it was worth the effort. It looked really good.
There was no crack in the door today, so I could see any of her dancing. I am sure she did really well though. I could see the nerves starting as the previous girls came out. I prayed with her and was sure she would relax within a couple of dances as she had with her practice exam. She did grade 3 today (after doing grade 1 last year). She got high honours last year - to the utter surprise and delight of her teacher who said she had never seen as high a mark before. Ruth is really hoping she can get high honours again. What made it harder this year though was that she was the only one doing this exam. I know she has done well. We all just excitedly wait for the official results which we should get in a couple of weeks.
Wednesday 31: We had Asher's IP (Individual Plan) meeting at Champion Centre today. So Asher stayed at home today with Rachel, who had a bit of time off with Josie coming to help. I thought this would be easier for Asher and Rachel than having them do all that extra driving. Lynda (her EIE at preschool) and I had both written pre-IP reports and Lynda came for the meeting too. It is always great to be able to look back and see how much Asher has grown and how much she has learnt over the last 6 months. It was also good to talk about some of the challenges that she faces and what goals we can make. Some areas had multiple goals, to help her step by step through the learning.

Jackie gave me some little felt strips with buttons for Asher to play with and she enjoyed putting them on her ankle. :-)
While Asher slept this afternoon I headed up to the school to help with sewing for the school production. One project I started working on was little white tops. I took the material home and finished them up on Thursday afternoon while Asher slept. They turned out quite nicely and I'm sure the girls will look lovely in them.

Friday 2nd September: It was too busy yesterday afternoon to take a children's photo as Ruth has started up with Jazz again (now that her ballet exam is over) and Hannah has joined in with the jazz classes too. We need to leave by 3:20, so it's a bit of a rush after school. So it was only Friday afternoon that I finally managed to get the children photo for this month.
Hezekiah in school uniform today as he had a school visit again yesterday and today. With the production coming up at the end of term they are going to be rather busy with that over the next 3 weeks - so we decided to get the visits done now. He got to go to assembly on Friday at the end of day too. When we left the assembly he said "I want to go home now". Once we were in the car he said he didn't want to come back to school. We chatted through things through the afternoon and evening and eventually had him happy and excited about school next month. He was very excited to bring his book bag home with new books to read. Once we had dealt with all the social challenges he has already faced, that excitement was back.
Asher is back into her love for throwing balls. It has developed though and now she alternates with the balls and other games. She can have 3 different games going at once and diligently alternates between them all.
Eventually I got the puzzles out so that she could at least get some other specific learning happening. :-)

A hard and dark week

Monday 15th: Although Asher didn't seem quite well enough to go to preschool today, Hezekiah was fine and had a great time. He came home with this crown which had a number of solar system items on it. :-)
Asher was in bed by 10:30am, so it was a good thing I hadn't tried to get her to preschool. She was up by lunch time though and didn't need a nap in the afternoon. She was looking so much better that I was sure she would be back at preschool on Tuesday.
Tuesday 16th: We arrived at preschool but very quickly I realised Asher was not really happy to stay. She kept coming to me and eventually went to the door and I knew she didn't just want to go outside to play - she wanted to go home. So we headed home. Again she didn't make it through the morning without a nap.
It didn't seem too much later that I got a call from the preschool letting me know that Hezekiah had a fever and was looking really tired. So I brought him home and he literally slept the rest of the day (photo below).
Wednesday 17th: Hezekiah and Asher were joined by Brendon today in having a sick day and spending the day resting and getting extra sleep. Brendon's chest was really sore and so he knew he needed a good rest to try and stop pleurisy. He was back at work on Thursday even though it was still quite sore, but by Friday morning it was much better.
Asher had a fever on and off through the day, so I took her and Hezekiah to the doctors in the afternoon. Hezekiah had also been complaining of a sore ear. Although his one ear was a bit gunky, it didn't look infected. Asher's throat was rather red and so he doctor took a swap to get tested. (PS: Thankfully nothing serious and so no antibiotics needed.) It was good to know what was worrying her as then we could help to try and relieve her pain.
Wednesday saw me hitting a really low point unfortunately. On reflection I am sure it was a combination of a few things: being unwell myself over the weekend, pms, variation in my diet and Asher missing preschool (so I miss my 2 x 3 hours without her). It's horrible to find yourself in that very deep dark place. I thank the Lord that I haven't had to experience that for quite some time now.

I know for some people they may think "what's the big deal" but the Lord has also graciously allowed me to have contact with a couple of ladies who do understand a bit more of what I am having to deal with. Every now and again someone gets a little more of a glimpse into my "normal" daily life and even though they can't fully understand it - they have sympathy and compassion. And that helps.
Thursday 18th: At 6:30am, just as Brendon and Rachel were heading off to work, Asher had a 1 1/2 minute Tonic Clonic. She had a fever through the night and so I wasn't too surprised by it. I managed to get her morning medication in and then she just slept on me till 9am. Thankfully Ruth got herself ready for school and as Hannah was complaining of a sore stomach - she just stayed in bed. By 10:30 Asher was back in bed for a nap - having not even tried to eat anything for breakfast. Hannah was feeling fine by now, so she rode up to school. Asher continued to have a fever through the day, so I was really pleased every time she got to her next medication dose (at lunch and then the evening) without anymore seizures.
Friday 19th: Brendon, Ruth, Asher and I headed off for follow up EAV testing this morning. Asher's system is so run down that she couldn't get anything done with her. Even just a base line test was way too low. It was incredible to see so tangibly how much her body has been hit by this last week. Thankfully she happily watched some DVDs we had brought with while the rest of us got tested. Both Brendon and Ruth have had wonderful improvement. She could then work at adding a few extra things to their new remedies. It was interesting that 2 of the remedies that came up for Ruth (to help with her inflammation and joints) were African plants. :-)
Brendon's liver is coping a lot better and his lungs have improved a lot too (both with room for more improvement - but already so much better). I'm sure his lungs would have been even stronger last week - before this week of flu.
I only finished my last remedies earlier this week, so the initial plan was not that I get tested today (normally you wait at least 2 weeks after finishing as there can still be improvement during that time). As Asher was too unwell though, there was time to have a look at how I was doing. It was such a relief to see a number of things sorted out. After my first remedy there had been absolutely no change, so this was a great relief.
I am now sure the magnets in Asher's toy bog (that was close to my remedies for a while) had caused the problem. After my low week it was a bit of encouragement that I needed. As I did have over 50 items in my first two remedies, she decided to just "re-do" those items that are still there (and not go looking for more).
As there is so much to deal with and my body is still under a lot of strain, I think it's a good idea to rather take it slowly. The healing will come. I have just had to accept that for a time, I will need to take supplements to help me cope. The Mannatech products I used a couple of years ago for my pms were very effective - so I just have to accept that they are needed again - at least for a time. (PS: I am writing this on Monday 22nd and after a couple of days on the supplements I can feel the difference they are making. So even in this I thank the Lord for His provision of something natural that can help me physically through this rough time.)
Brendon had only book a half day leave, but he got a call from the other manager as he was heading back to work, to let him know that they were almost done. So he got to stay home and join me at the girls assembly in the afternoon.
Hannah's class spoke about the island brochures they had created. And Ruth's class showed their Olympic artwork.
Saturday 20th: Ruth had her ballet exam practice this morning. She did grade 1 last year and has jumped to grade 3 this year. She is also the only girl in her class that is dong the exam. So that makes her a little more nervous. Even though it was just a practice today, she was still quite nervous to start. I know she will do really well and it's nice that she is hoping for (and working towards) getting honours. Just 10 days till exam day now.

Sunday 21st: Thankfully Asher was eating again on Saturday and we were all well enough to go to church today.
Brendon took Hannah up to the park early this afternoon. And then the 3 older girls and I headed off at 4pm for the big "surprise" event that has been on the calendar for months now. Rachel bought tickets for Disney on Ice. I had taken her to watch it 7 years go and had kept it a surprise. She got dressed up all pretty but only found out what we were doing when we arrived.
So when she saw it advertised a couple of months back, she wanted to create the same fun memories for Ruth and Hannah. So they only found out when we arrived. The photos will have to go into a post of their own. :-) At least we had a really lovely end to a really hard week.

Dora, dance, slide and salmon

Tuesday 26th: Asher learning to say "Dora" and getting a "Yay" from me with a tickle every time she got it right (and then asked "more").
She has changed from watching Diego to Dora lately. As she had her own way of saying "Diego" (the start of the work - "Dee-ai") she had been calling Dora "Dee-ai". So we have been trying to teach her to say Dora but she would say "Dee-ai Ra" instead. Today I emphasised the "D-aw" at the beginning. We had a game of it and every time she said "D-aw Ra" she got a tickle. She just loved it. Even though there is still a pause between the sounds - she is getting it right. It's amazing to see the concentration on her face as she does it. Wonderful to see her managing though.
While I was out taking the older girls to St John, Asher had a 7 minute Tonic Clonic seizure. Brendon was busy making Hezekiah some food, so Hannah was watching her in the lounge.

It was the first seizure that Hannah has been alone with her. Hannah did really well, stayed nice and clam and called clearly "Asher is having a seizure". Brendon had head a thump (Asher falling) and then immediately heard Hannah's call. So she did really well. Unfortunately Asher went a little bit blue around her mouth. She also had what seemed like terrible stomach pain when it stopped. Lately she has often had shaking after the seizure stops (like shivering) and Brendon said it was really bad this time and he struggled to get her to relax. Poor little girl.
Wednesday 27th: Back to Champion Centre now that it's school term again. Asher does love these matching coasters.
During group music Asher got to play with Ali's puppet at the end. It helped give her something to do while the other children had a massage (Asher does not like lying down for a massage AT ALL). Ali uses it at the beginning when they sing the "hello" song and so Asher made the puppet look at different people and said "hi". It was so cute.
A new addition to our families enjoyment is cashew nut butter. I don't know why I didn't do this ages ago. There is no need to add any other oil at all. And it's delicious. Megan suggested it when I was asking her about alternatives to butter (for on toast). Yum yum. Brendon, Hannah and I can't have butter, so this is a great option for us to enjoy a hot piece of toast (gluten free bread of course - recipe can be found here).

Thursday 28th: This was most definitely a photo opportunity. Seeing Hannah choosing to read first thing in the morning. It's not a compulsory school book, but rather one she got out of the library. Unfortunately it ended up being a bit too long for her. I'm so pleased she tried though. :-)

School term means ballet is back on. Ruth is the only one from her class doing the exam. When it comes to their dances, Ruth does it on her own with the rest watching and giving input, and then they all dance it together.
The practice exam is on Saturday 20th August and exam date is Tuesday 30th August - so just a month to go now.

Rachel was back at ballet today. She had an ankle guard on and didn't do any "loading" of the ankle. So she didn't put any weight on it if it wasn't in a normal standing position. So she really just "marked" a lot of the exercises as she was not able to do them properly (so she walked through them and focused on her head and arms).
She has been practising at home over the last 2 months while off - but mostly just sitting and doing the foot work off the ground. So at least she has not forgotten any of it. The ankle was a bit sore over the weekend, so she just has to take it slowly. The healing has taken a lot longer than we had hoped and she is still not anywhere near where we had hoped she would be at this stage.
I chatted to the physio on Monday about the scan results. She confirmed what the radiologist told us - that there are no tears in the tendons or ligaments. The physio explained that the dark area we saw in the middle of her joint is inflammation. So although no swelling is showing on the outside (and never has), it is still inflamed in the centre of the joint.
Rachel is doing what she can to try and get that cleared. She does ice and heat regularly (especially after extra exercise like work this morning and ballet this evening) as well as taking collagen and turmeric. Thankfully her exam has been moved to September, so she has a couple of extra weeks to hopefully get back to being able to use the ankle properly by then. Only time will tell.
Friday 29th: Ruth has been trying to earn some extra money this week and finally got the hoped for money from Rachel who paid for some massage. We all had a good laugh as the reason she wanted the money was to hire this DVD from the library - FOR Rachel. It was a "gift" to her (which they all then got to enjoy).
I was really pleased with the library sending home a form that I had to sign before Ruth could take it out, as the DVD was PG (parental guidance for younger viewers). I could then do a bit of research and find out about it before she got it. We could also then discuss a few things before we even started watching it. We enjoyed watching it with the older girls over Friday and Saturday evenings.
Saturday 30th: Yes, it was a picture worthy moment - with Brendon and I going out for the afternoon - ON OUR OWN!!! A friend has organised a book club of sorts, and we enjoyed a lovely afternoon fellow-shipping and discussing the book we are reading.

Ruth's creative juices were flowing while we were out and they created these lovely animal faces.
We also had a neighbour come over to watch Asher (using some of the carer support hours that I have available). It was nice that Rachel and Ruth didn't have full responsibility of watching Asher and could get other things done. It's a nice way of introducing her to watching Asher and all that is involved with that - but still having the "backup" of our girls there to help with any seizures or just with daily communication challenges that come up.

Sunday 31st: We dropped Rachel off in Amberley on our way home from church so that she could get some St John competition practice done.
Brendon took Hezekiah to pick her up later in the afternoon. A great opportunity to visit the park there.

And enjoy some "parent-child" time together.
It looks like we will be breaking our pattern for a while. We used to alternate between Brendon and I with the older 4 children (and it was due to be Hezekiah and I next), but as there was some heavy furniture to be picked up on the way home, Brendon was the logical choice. There was no way I could do it. I also get to regularly spend time with Rachel travelling to different things (like ballet and the orthodontist) so Rachel and I might not be included in the schedule for a while.

A first for me was cooking salmon this evening. None of us have ever had salmon this way (only ever had thinly sliced pre-smoked salmon - or in sushi).
Brendon, Ruth and I were the ones that mostly enjoyed it. Ruth especially needs the Omega 3. I was pleased I managed to cook it well. I was hoping Asher would like it, as she has gone off protein for a while now, but alas, she didn't even want to give it a try.