Sunday, July 16, 2017

Blood, snow and hair

Monday 10th: An unpleasant start to the day with Asher having a 1 minute TC at 6:30am. She had been lying on me since before 6 and her jerking was getting so bad that I had actually asked Brnedon to get her morning meds (to give them a bit early). While he was getting it, the seizure started. What made it horrible was that after half a minute break, it started up again (although different) and went on in total for 13 minutes before she finally went to sleep. It looked far more like seizure activity this time, so we gave her the extra meds at 7 minutes.
By 8am Ruth and I were on the road down to Oamaru (around 330km away). She had an appointment after lunch to do blood analysis under a dark field microscope. Glen has a clinic in Auckland and was suggested by friends. We were pleased to hear he has a clinic in Oamaru every couple of months. Much easier than trying to get to Auckland. I tried to take as many notes as I could, but didn't think at the time of taking a photo of the screen as he showed us things. So I got some photos on-line to give a bit of an idea. This first one shows closer to how health red blood cells are spaced and shaped. All next to each other and nice clear circles.
Ruth's looked more like this photo (although not as bad). Most of her cells were in twos. This immediately indicated that she will have low energy as the cells are stuck together and so can't get as much oxygen (from all their sides). He could also see that her body is having to re-make red blood cells every month rather than every 4 months. On a closer look, it's also clear to see that many are mis-shaped (with bumps around them) and some were even flattened (more oval than circles). So he explained what we were seeing and what causes the change. He would also mention what "symptoms" these variations would cause - and many were exactly what Ruth struggles with. He could tell she has low iron, chronic inflammation, allergies (hayfever in her case) and malabsorption of her food.
On blood tests her B12 was excessively high but he explained that she was actually low on B12 because her body was just storing it (thus high on blood test) but not absorbing it at all (therefore actually needing more of it).
So she got a B12 supplement that is absorbed in the mouth, directly into the blood stream, to help with this. She got a number of other things to help with healing of her gut and lifting the levels that are low.
We also looked at a few dry blood samples (just an example on the right). He could clearly see that she doesn't drink enough water as there were white cracks through the sample (she has not been drinking at all lately). Thankfully she didn't have as much toxins (the black areas) as many children he sees, but she still does have - mainly due to her gut being compromised.
Ruth has had the low iron and inflammation for many years (since she was a toddler really) and the doctors don't really have any idea how to help (other than suggesting arthritis medication which is like chemotherapy). Her joint pain has increased over the last year, so we really do pray that this will help her.
Glen also suggested two products for Asher. She has been jerking so much today that Brendon eventually called the hospital for advice on what to do. They have suggested giving her a double dose of meds at night for 3 nights and then re-evaluate (possibly then needing to give a double dose in the morning as well). I'm really hoping these products can help, as it's always so hard putting extra toxic medication into her little body.
Tuesday 11th: Hannah enjoying holding one of the chooks for a bit today.
This evening we were invited to see a show by the "blanket band". First was "Where oh where has my little dog gone." Hezekiah was looking and Hannah was the dog.
Then "She will be coming round the mountain when she comes". This verse was "she will be wearing pink pyjamas".
Then "On top of spaghetti" where Ruth did most of the singing and Hannah and Hezekiah whispered the endings of each line.
The last item was "This old man" where Hannah was the man and Hezekiah was the dog that kept getting a bone.
Thanks Ruth for creating such a fun afternoon for them as they practiced. We enjoyed the show too.
Wednesday 12th: Rachel had a day out with the St John competition teams in town today. There had been a lot of talk of all the snow that was coming, but it wasn't as much as we hoped.

The mountains through the Weka Pass did get a bit of snow and did look very pretty.
We spotted a higher mountain behind Frog Rock which looked loved solidly covered in snow. The mountains around our home were completely white like this, but as it was still very overcast we could get any photos of them.
So much excitement every time it actually started to snow. This photo was around midday. We really thought it would start  settling well around the garden now, but id didn't last long.
Just a few km down the road towards the mountains there was a lot of snow, but we just missed it this time.

The chooks had come up onto the deck on Tuesday a few times, so we decided to move their cage up here so that they could have more protection from the cold.
It didn't snow as much as we thought it would, but I'm still glad we moved them up here. Now we don't have to wait till midday for them to lay, as they are laying as early as 9am. Once they have laid their eggs we let them out - so they are enjoying the extra time in the garden. Although they still often come up here when it gets a bit too cold out.
Thursday 13th: When we went to fetch Rachel today Ruth and Hezekiah handed in their colouring in competitions. I was so impressed with Hezekiah's one. He put so much effort in. Especially with the 4 square man. He has never enjoyed colouring in and it was often a problem at school as he would rush to get things done, use just one colour to do a whole picture and not bother with keeping in the lines.
So when I look at this it just amazes me. Well done Hezekiah.
Ruth put a lot of effort into her one too. She would love to win one of the mini iPad prizes - so she always puts a lot of effort in. And it shows. Beautifully done Ruth.
Friday 14th: Ruth built a massive "fort" in Hezekiah's room today. Without the snow to play in outside, it was just cold. So it was nice that they had some good ideas for inside play. Thank you again Ruth for getting something started for them.
After 3 nights of extra meds Asher's jerking was still continuing. We decided to just give it a day or two before considering the extra morning dose (as we notice negative effects if she has double dose during the day). So we went back to normal dose on Thursday and were so very thankful when there was huge improvement on Friday.
We had worried that it would get worse with less medication in her system. What an answer to prayer. It had been a really hard week with all her jerking, not knowing what was causing it. Time will tell if the supplements are helping. We were just relieved to not have to keep giving her extra doses of her AEDs.
Saturday 15th: Rachel had St John competition training today, so Brendon and Hannah used the pick up as an opportunity to have an outing at the Amberley park.
In the evening Ruth got Asher and Hezekiah doing some "exercises" with her before bed. Asher copied nicely putting her legs up and then her arms.
Sunday 16th: A change of plans for today as Brendon started feeling terribly nauseous through the night. It looks like it may have been a 24 hour tummy bug. As Brendon doesn't easily vomit, it tends to be really hard on him. He spent almost the entire day in bed.
Asher had a 1 minute TC at 2pm. The extra jerking started again a little after it had stopped, but thankfully only went on for about a minute. We were so relieved. We are also thankful there haven't been any more seizures this week (since Monday morning) as that jerking kept me on edge the whole week. Now we just pray that the tummy bug doesn't go through the whole family, and that Asher especially can avoid it.
Rachel did Ruth's nails today and Rachel and Ruth also spent time doing Hannah's hair in different styles. I've started just doing 3 braids at a time of Ruth's hair (rather than doing 6 to 8 on the weekend). We can generally get 3 done within an hour. We had 5 sessions this week (managing 5 on one of the days) so we got 17 done this week. Just 113 to go. At 3 per session that's another 37 sessions. I'm hoping to get it done before it gets totally uncomfortable with my big tummy in front of me. In total it will be around 90 hours of work to undo and re-braid it all. I'm glad we are already over half way.

Sunday, July 9, 2017

Chooks and a harp like guitar

Tuesday 4th: We were especially glad to get out the house to the Champion Centre again today. Asher is getting a bit of cabin fever with missing her hours at preschool.
This afternoon we got a surprise call to ask if we would like 5 chooks, including their cage. They are moving and have decided it's easier for the chooks to stay in the area. So we were so very grateful that they thought of us. Brendon was able to pick them up after work (and I got the photo below on Wednesday). They normally spend the morning in their cage and then enjoy the garden in the afternoon. I was a little nervous about our property, hoping they would stay close - which so far they have. We also decided to put their cage close to the house so that it's easier for kids to collect eggs and check their food and water. It's also nice to be able to see them from the kitchen window.
It just means that I feel sorry for them in their, and they get let out earlier than what they are used to. :-) Hopefully those who have not laid by the time I let them out, will come back to lay.
Wednesday 5th: At 7:45pm Asher had a 1 minute Tonic Clonic. I had just said goodnight to her minutes before, and it just got to me more emotionally.
Perhaps I wonder if I had missed some of it on the monitor. Brendon pointed out that I must be grateful we got the monitor on straight away and that I did notice. I think it's just harder when you are not there when it starts. At least she didn't have a fall with this one.
Ruth at full school assembly today - very pleased to be among the top 5 fundraisers for their 40-hour famine. She did so incredibly well. She raised $260. The school's goal was $1,500 - which they reached. It was great that Ruth herself was able to raise 1/6th of their goal.
Thursday 6th: Asher had a 1 1/2 minute TC at midday today, just before her new carer left. So one advantage was that the carer got to experience it. She again had the extra 10 seconds of jerking around 30 seconds after it had stopped. This has been happening since the end of May and is rather unpleasant to witness. I took this photo during her nap. Little Miss was already on the bed when I brought her, but once Asher was settled, Little Miss had come up closer to cuddle up right next to her.
And then we were again thankful for the video monitor we have as she had a 1 min TC at 8:30pm. She had a lot of shivering, shaking and jerking after this one.
Ruth enjoying "putting the chooks away" this evening. We know they will go on their own later, but feel better knowing that they are in before it's really dark out. Ruth also enjoys getting them to follow her (with the help of bread crumbs).
Friday 7th: Thankfully Asher had a good night but at 8:15, just as I was getting ready to take the kids to school, she had a 1 min TC. This time she had a full minute of jerking after the seizure. Previously the real jerking would only last around 10 seconds. We don't really know what is causing this. Rachel sat with her so that I could get the children to school (although a little late).
She woke at 9:15, just minutes before a different carer arrived.
And at 9:30 she had a 2 1/2 min TC. I head the thud of her fall from the kitchen, so the carer didn't even have time to call, I just called "I'm coming". She is having such a rough time. That's 8 seizures within the last week (after only 6 in the whole of June).
Asher enjoying playing a bit of guitar with Ruth this afternoon. We discovered that Ruth had gotten tired of Asher just strumming on this guitar, so she re-tuned it to be more like a harp (the strings are all in one key). Now we finally understand why it sounded so nice when Asher fiddled on it. Good thinking Ruth - and good skills too (just tuning it by ear to sound so nice).
Saturday 8th: Wonderfully Asher had a day without seizures today. At this point each day without is treasured.
Photo below: Enjoying playing cars with Hezekiah today.
Sunday 9th: She had a seizure free day but it ended with a 2 minute TC at 8:15pm. It changed after the first minute and seemed to stop at 2 min. The jerking that she has had afterwards was a bit different this time. It was very violent and we were not sure if the seizure had actually stopped. We stopped timing eventually at around 5 minutes, as we just didn't know what was going on. It took her a long time to finally settle down to sleep, with lots of shivering and jerking. Brendon lay with her so that I could carry on and finish off Ruth's hair that I had been re-braiding.
The rest of Sunday's photos are from a bit of a party that Ruth had with a few friends over to celebrate her birthday. I'll leave those photos for their own post.
10

Monday, July 3, 2017

Captain America and a carpet

Tuesday 27th June: Asher missed Champion Centre last week as she had a cold. I was pleased she was well again this week so we could head in. She missed preschool again this week, so it was good for us both to get out. She is stating to do some "school" drawing / writing practice.
After the session I had an appointment with my midwife. The session ended early as there were a couple of therapists off sick. So we actually managed to get some shopping done (I don't normally go anywhere near a shop with Asher as it's just so hard). We managed pretty well though and she did really well at the appointment again too.
One of the items I bought was new gum boots for Hezekiah. We still can't figure it out - but his gumboots disappeared. So at least he has shoes for the garden now. (Photo: The scrap dishes had not been emptied for a couple of days - so he decided he would do them all. He and Hannah share this job - so it's always nice when one offers to do them all.)
I got Asher some warm gumboots too so that when we need to head out taking the kids to school, she can quickly pop those on. That means I don't end up carrying her. She is so heavy and it's getting harder to carry her. She doesn't wear socks inside (as she associates them only with wearing shoes out of the house), so this helps make getting something warm on her feet nice and quick.
Wed 28th: Having some fun with Hezekiah. :-) You can just spot his big smile. He kept calling her back to sit on him.
Thursday 29th: Ruth helping watch Asher while I got Hezekiah's lunch ready. I'm spoilt the rest of the week as Rachel does it for me. Thursday she leaves really early for work though, so it makes it a bit busier for me (and the others need to take turns watching Asher).
Hezekiah is going to a party tomorrow and so he managed to borrow this Captain America outfit for the party. He was so excited about it. Not only the party but also getting to dress up in such a fancy suit. He couldn't resist "trying it on" this afternoon. The funny thing was that on Friday morning he put it on again (we had made sure he didn't go to sleep in it) and he said "I'm just checking that it fits". Later I went to check that he had packed it in his bag and couldn't find it. I then realized he had put it under his school clothes. Nice try. :-)
Ruth had a full week this week with dress rehearsals every day since Sunday. They had a matinee performance after lunch today for the younger part of the school and then Rachel and I went to watch the production this evening. Brendon then took Hezekiah and Hannah to watch it on Friday evening (even though they had gotten to watch the matinee - which we didn't know about when we bought the tickets). It was great that Ruth could be a part of it as it was a Senior Production this year and she is still in the Junior section of school. There were only 2 girls from the year 7 group who were involved. They allowed the year 7 children to be a part as next year it will be a Junior production and they will be in the senior school (so they would have missed two years).

Friday 30th: What a beautiful way to start the day.
Unfortunately Asher had a 1 min TC at 8:30 (just as we were getting ready to take the others to school). Wonderfully it's been a great 2 week break since the last one. We are so thankful for that.
The photo was taken this afternoon. She often plays on her bed with the iPad and her dominoes (then I can get things done as I watch her on the monitor). It was great to see her choose this "school" game today. Matching letters. It really is just a basic puzzle for her - but she is learning to differentiate between the letters while she plays.
Sat 1st July: I took Rachel to Amberley early this morning for a full day of St John competition training. Brendon then got to take Hezekiah out for a play at the park. Hopefully we can get back into these parent child outings. It's extra hard through the winter months. Not just the cold but the days been so much shorter too. At least the days are starting to get longer again.
Rachel and I had picked up some free carpeting when we were in Rangiora for her driving lesson last Monday. I suggested we try and get it in today. It would be good for Ruth to get the benefit still during these colder months.
The biggest job was getting her room empty. There are a few boxes of things that she will now need to go through and unpack into the proper places. Perhaps a good excuse on getting the room nice and tidy.
All done. Nailed down very basically, but thankfully it was a really thick carpet with a sticky backing. So it shouldn't move around too much. Then to get all the furniture back in before the rain and before I had to leave to fetch Rachel.
There was a discussion group after the training for the leaders of Camp Good News. We had organized that I attend with Rachel (which saved us an extra trip) and we had a great evening. Rachel was also pleased when Daniel arrived. He and a couple of his brothers had driven down for it.
Sunday 2 July: After a 2 week break it was disappointing for Asher to have a seizure today at 1pm. Thankfully just a 1 minute Tonic Clonic.
Monday 3 July. Finally got the monthly children photo today before the middle 3 headed off to school. Asher missing preschool again this week and until we can get a replacement EIE (and get police clearance and paperwork done).
Asher had a 1 minute Tonic Clonic at 8:30am, just as we were getting ready to take them to school. So not a great start to the month for her.

Monday, June 26, 2017

Hi baby

Monday 19th: Rachel had her 2nd free driving lesson this morning. We had planned to do things the same as last time, and head to Rangiora for the lesson while Asher was at preschool. Unfortunately Asher's EIE has a major medical emergency in her family and so she is watching grandchildren - so Asher can't go to preschool. I wondered how things would go for the hour while we waited for Rachel, It went really well though. I brought her bag of church toys as well as the laptop with some DVDs. She happily watched Barnie and build puzzles while we waited.
Asher missed preschool on Monday and Wednesday, so it was rather busy for me (and therefore not one photo was taken).
Thursday 22nd: Thankfully a support carer came over on Thursday while allowed me to get some things done, including making a sugar free lemon meringue pie. I have been wanting to try this recipe for a while, so was pleased to finally get it made. It wasn't wonderful at first, but it's grown on me though the week and I have loved having it as a snack option. It's wonderfully filling and is healthy too.
Friday 23rd: Brendon had today off and we headed into town with Hannah and Hezekiah for my 19 week scan. It's an anatomy scan, so it did get a bit boring for the kids. They were very excited about seeing how it worked though and then having lovely 3D photos too. She kept her arm in front of her face, but we did get a couple of nice shots. I love how much detail you can see (like the ear on the left one).
We decided to give them a treat and go to a restaurant for lunch. The same one we went to after the previous scan. We wanted to enjoy those spar ribs again. :-) Hezekiah and Hannah both wanted fish and chips and we had a nice meal together before heading home.
Brendon had actually taken Thursday off due to dizziness and flu symptoms. Thankfully a day of sleep helped tremendously and our plans for today were not affected.
We arrived back just in time to get the children to their assembly. We were a bit early and so Hezekiah and Ruth got to show their classes the photos before assembly started. I always think it's so important for children to see how wonderfully these little babies are made - even when they are still so VERY small.
Hannah was pleased we were back in time because her class were sharing some posters they had made about land forms. It was also nice for Brendon to be able to attend one of their assemblies.
Saturday 24th: Hezekiah went exploring today and Brendon spotted him on top of the small wood shed.
Rachel went out with the camera to get some photos for me (and so Hannah and Ruth went to join in the fun too).
I spent most of the afternoon in bed. I think the long morning out on Friday tiered me more than I realized. It's also been a more tiring week with not having those 6 hours with Asher at preschool. It was good to just take time to rest, as she will most likely miss next week's preschool too.
Sunday 25th: There was a shared lunch planned for after church today. On Saturday I had decided it was in the "too hard" basket. I felt more rested on Sunday morning and made a quick plan to just buy some hot chips to add to the lunch (rather than stressing about making soup on Saturday). I wasn't sure how Asher would do, but she was happy watching a Wiggles DVD while we had lunch. So it worked really well. I'm glad we stayed. The children are looking forward to the next one.
The children get book club order forms twice a term and I finally ordered some books on the last one (as there were a number of $2 books). They arrived this week, so Hezekiah got Rachel reading him "The Three Cattle Dogs Gruff" this afternoon. :-) Just after this photo she had to start again though, as Hannah wanted to be a part of it too.
Monday 26th: Hezekiah got Ed the Ted from school again today. I love how it gets his imagination going as he immediately comes up with ideas of what to do with Ted. Hannah was very accommodating and played "Tag" with them. He then headed out to do some "Duck shooting".
Every now and again Asher will go through these books. The funny thing is that she doesn't look through those colourful books (which have lovely stories about Alphabet Animal characters). She will always choose one of the children's body books to look through. And then she talks to me (in baby garble) about what she is looking at. So cute.