Glasses, curls, flowers and fun

Thursday 17th: Such a sweet picture. Special to have Asher allow Anakin to lie on her lap.
Friday 18th: Ruth's new glasses arrive today. They do look a bit big from the front, but they do actually look really nice on her. She has a very sophisticated look when she has them on. :-) Hopefully no more tired eyes now.

It was pink shirt day today and so the children were encouraged to wear a pink shirt in support of "anti bullying". Hezekiah was not that excited about wearing one of Hannah's pink tops, and neither was I. But I explained why it was happening and what he was telling everyone by wearing it (even if he didn't like it) and so he got really positive about it. I even got used to it by the end of the day. :-)
Enjoying some close time this afternoon. Asher really does like sitting with people, so it's nice she has so many to keep her company.

I asked Rachel to take a photo today of something at her hair dressing course. They did some practicing on putting foils on today.
They also get to work on each other's hair. Rachel straightened one of the girls hair, and in return she gave Rachel some lovely curls. They look so nice.

This evening Ruth headed off to the Junior Formal. We are thankful to a friend for lending her a dress for the night. When we arrived for the bus I mentioned getting a photo and she said "no - that's embarrassing". Well, her friend said the same thing to her mum.
Ruth ended up getting into their car as the bus was late, and her mum got this photo of the two of them before they left. At least it's not just me enjoying getting photos of their special events. :-)
This was one of the many photos taken on the night. A special one with her friends.

Saturday 19th: Ruth keeps asking when we will be able to watch her playing netball, so as Brendon wasn't working today I asked him if he would take her.
He got these lovely photos of her. On reflection a couple of weeks later I realized how good this camera really is - much better than the camera on my phone. So although really convenient using my phone, I know that when things are a bit further away - I need to use my proper camera.

My request was also that he take Asher with, hoping that she would be happy to just sit in her buggy. Unfortunately she started crying as soon as they arrived and would just not leave the car. So she ended up just sitting in the car with the iPad the whole game. Brendon managed to take those photos through the fence as he had thankfully parked right where they were playing. So I was pleased he did at least get to watch her play.

Hannah and Hezekiah had decided that they wanted to go with too, so it was a nice morning out for them, and good to give Ruth the support. It's hard that we can't be there every week to watch her, but when she signed up she knew that it would not be practical for us to attend often. So I'm glad we could make the effort and get some of us there to watch her.

Anastasia has found her feet.

Such a cutie.

It's been so wet lately that Rachel has not gotten to plant her bulbs as early as she had hoped. She managed to get out there today though and I'm sure it's going to look amazing when they all come up.

Making the most of the sunny weather and almost dry ground and getting the grass cut. The children were a great help in collected piles and piles of branches that have fallen off the huge willow tree.7

Sunday 20th: We had the horrible experience of having a mouse try and make our car it's home. It tried to make a nest in the glove box and left our car stinking so terribly. Brendon took care of the mouse - he ended up catching 3 mice in the garage, 3 days in a row (he found the perfect spot for the trap). The stink however - was not taken care of - no matter how many times the glove box was cleaned. We realized it was probably all the carpets that were stinking - so finally decided to just hire the rug doctor machine and give the car's carpets and chairs a good wash. Ruth enjoyed seeing how it worked and help Brendon get it all done. What a relief to finally have that smell gone.
Ruth having a play session with Anastasia. She always comes up with the most unique games. :-)

Monday 21st: Anastasia enjoying a nap next to Anakin this morning.
When she woke up I just moved her next to him and she loved watching him.
He is such a big cat. At this stage still bigger than Anastasia.

Tuesday 22nd: Another fun game. This time peek-a-boo. Ruth gets Anastasia to move around and look for her in different areas.
So much fun.

A very up and down week for Asher

Saturday 17th: Rachel was excited about going for a job interview of sorts at the Nor'Wester Cafe in Amberley today. It was perhaps more for her to see if she would want to work there. She spent two hours over lunch doing a whole range of tasks. She will start working there next Saturday.
Hezekiah had a runny nose when he came home from school yesterday and when he woke this morning he had a fever and just slept the day away. He likes to be around people, and so just moved around the lounge (on and off different chairs through the day). He didn't even have the runny nose today. He did vomit in the evening and again during the night. So Anastasia and I stayed home with him on Sunday and he missed school on Monday to make sure he had the 48 hours clear.

On reflection (a week later) I think the vomiting may well have been because of not eating the whole of Saturday (as this has happened to him before) rather than a tummy bug. No one else vomited and for this I was extremely grateful.

RIGHT: The roof and walls went on to the cottage next door very quickly. It's a metal exterior and that made it very quick to get done.

Sunday 18th: Ruth went to a Kiwi Watch overnight. They hike up to a camp site and change bait in traps every 100m on their long hike. The traps are for the Kiwi predators (thus the name). She was exhausted when she got home and also struggling with a cold. So she stayed home from school on Monday too.
Hezekiah had a relaxed day on Sunday (staying in his pjs the whole day) but already felt much better.

Monday 19th: School visit for Asher today. She didn't have Hezekiah there to draw her into the game, but at least she went out there with the other children around.

She loved playing with balls again. There were plastic ones as well as tennis balls. She sorted them by throwing all the tennis balls to Rachiel (her Teacher aide) and the plastic ones to Harriet (her Special education teacher who was here to visit with her for a bit this morning). I headed to the office to drop medication off and when I got back the game was still going.

So I asked her teacher if there were any bigger balls for kicking. She found a couple and I helped move Asher onto a new game. Rachiel had experience from this at preschool and told Harriet to just leave the balls where she threw them (to be collected later). Asher then started wanting to pick the bigger balls up to throw. She did that a couple of times but then Rachiel took her leg and helped her kick it. I had also asked Jens to kick with her - so with both demonstration and physical help, she got directed and then enjoyed kicking. I'm so thankful for how well Rachiel knows Asher as this makes it so much easier to direct her.

She stayed a bit later today (till 1pm rather than 12:30) and so she was enjoying a play at lunch time with Rachiel when I arrived. At 12:30 she had asked for me and went to get in her buggy. This may have been her "clock" set from the previous 12:30 visits, or the fact that Rachiel went for a break and she didn't know the other teacher aide as well (or a combination of both). At least she has the buggy there to be in when she needs to feel safe. And as soon as Rachiel was back she was out and playing. So great steps forward.

Ruth decided she wanted to sort out my pantry this evening.

Thanks for sorting Ruth - I love having things a bit more organized and just haven't gotten the time to do it myself.

It's fun to see more and more areas where Ruth is very similar to me.

She benefitted from the day home resting, but is already feeling much better and will be back to school in the morning.

Tuesday 20th: There was so much planned for this Tuesday that I was really glad Asher was still well. It is her last day at Champion Centre and she also had 4 ladies visiting. From school she had the 2nd Learning Assistant (so that Rachiel is able to have breaks in the day) as well as Harriet (Learning Support Teacher - who will see Asher once a week and draw up her weekly plans). And from the Ministry of Education she had her Speech Therapist and OT.

It was lovely for me to meet the MOE ladies and for them all to get to watch Asher and see how much she is capable of. The music session was especially eye opening for me. I was confident that Asher would not be upset by having the extra ladies around (and she wasn't). They had asked Lynda if she was ok with them joining in her music session. She said yes, as long as they joined in. ;-) After some of her routine games (like ribbons pictured) we got the teddy bears down and first did her favourite song. Then Lynda introduced 2 new songs. I was amazed to watch Asher. She looked around the circle at the different ladies doing the actions and then started doing some of the actions herself. She did just a couple of actions on the first new song, but on the 2nd one, she did them all. Normally she would just try and get away from new things (or just ignore the new song). So this was really amazing to watch. Modelling is very clearly going to be a huge key in getting Asher to learn new things.

There were a number of things that happened at each session that gave us things to chat about and helped the ladies learn more about Asher. It was such a productive morning.
Asher enjoyed the rainbow ring during group music (another of her favourites) and then even allowed Dad to massage her during the last massage song. To think how far she has come. Last year she just wanted to run every time this song came on. Slowly she learnt to just sit through it and eventually allowed a little bit of touching. So it was special to see her getting a nice massage from Dad.
Thanks to Sarah for taking photos for me while I was feeding Anastasia.
And thanks to Brendon for taking the day off to join us. It made it so much easier for me as other than when Anastasia was feeding, he looked after her so that I could focus on Asher and the guests.

Asher got her certificate from Champion Centre and they sang "Happy School Days" to her.
Once the sessions where over I got to spend a bit more time chatting through things with a few of the therapists and her guests. It was good to have a quick brain storming session and also get to answer questions and allow the guests to understand a bit more about Asher and how she learns and the progress she has made over the last year.
Originally Asher had a hospital appointment for this afternoon (and that was the main reason Brendon had taken the day off), but as we had seen the doc during her hospital stay last week, he was happy to cancel he appointment and have a check up again in a months time.
Hezekiah enjoyed making a huge tower this afternoon and asked that I come and take a photo of it. Great job Hezekiah.
A local bible study used to be every 2nd Wednesday but has now been moved to Tuesday and so we went as a family for the first time this evening. We had a shared dinner and then the study. During dinner Hezekiah and Jens had a great time playing. Such cool masks.
Thankfully it went really well with Asher and so it looks like we will be able to attend together more often.
St John Youth was cancelled today due to the potentially bad weather with cyclone Gita arriving, so it was nice to have her join us this evening too. Although there was a lot of rain through the day and we felt it was safer for Rachel not to drive this evening, it thankfully was not too bad in our area. We have had storms that were a lot worse. Other parts of the country didn't fair as well, so it was still a big event for the country.
Wednesday 21st: Asher was due to have a school visit today but had a seizure at 7:40am. When she woke after her sleep she seemed ok, so I took her to school (although a little late). She was not very happy and within half an hour of me being home they called me to pick her up. We didn't know if she would settle, so it was worth trying.
She looked like she was perhaps starting with a cold (although the runny nose may have been because of her crying) and so it was good for her to be home. She just got worse through the morning and was eventually having so much neurological activity that I was relieved when just after 1pm she had another seizure.

She actually had a sleep late morning (which she never does) and when she woke she had pain on her face and big jerks which just kept going on. Thankfully after the seizure she was able to sleep well. She ended up sleeping most of the afternoon and developed a fever through the afternoon too. She didn't eat at all through the day, so a very similar day to what Hezekiah had on Saturday. She had another seizure at 8:40pm but thankfully had a restful night after that.

LEFT: I just love how Anakin lies on people. He is too big to just fit on a lap, but that doesn't stop him. So cute.

Thursday 22nd: Asher was due to have another school visit today but she still had a fever when she woke. She ended up sleeping almost the entire day.
Her new drug arrived yesterday and although it's not ideal to start with her feeling unwell, we also want to get more seizure control. So we started that this morning. It's an addition medication rather than replacing the one she is already on.
The research indicates that the help that it may give is to get her other medication working more effectively. We know the drug she is on helps a lot - so if we can get it working even better - that would be an answer to prayers.
Rachiel popped in for a visit this morning. While she was here Anastasia rolled over on her own for the first time. She did it a couple more times through the day and so I took this photo to remember it.

Fun with the neighbours on their bikes this afternoon / evening. This photo was taken at 6:10pm. It's nice that they can enjoy the sun as it won't be too long and the days are going to start getting shorter.

VEEG set up and 3 months old

Sunday 11th: Ruth giving Anastasia a work out this morning. Encouraging her to roll over. She is getting close now.

After church we didn't head back home but had lunch at our Pastor's home and then headed into town to drop Brendon and Asher at the hospital. They will spend the week in hospital with Asher having a VEEG (Video monitored EEG).
Brendon took these photos in the evening. Having her church bag of toys and her own DVDs was a big help in allowing her to feel settled in the room.

It was a nice spacious room with lovely pictures around the top. In the first one below you can see the camera in the top of the room. She will be hooked up to the EEG machine tomorrow morning and they will have video monitoring of her too.

The room has an on-suite toilet as she won't be able to move further away once she is set up. She will actually need to stay on the bed or on the floor (as pictured above) for her to stay in the view of the camera.

Ruth setting up a nice photo at home this evening.

This is the info I shared on Facebook explaining what's happening this week.
I should have explained the reason for this testing. Although we already know that Asher has a gene mutation that causes seizures (Dravet syndrome - an error in the sodium channel) her neurologist suggested these tests. Her last MRI was when she was 6 months old and all EEGs that she has had have been for 20 minutes and never while she is having a seizure.
So although her neurologist thinks it's unlikely (as we already have a reason for the seizures) he wants to check and see if there is a structural cause as well. In some cases there is one specific area of the brain that is the focal point where the seizures are coming from. In some of those cases, an operation can help remove the isolated "problem" area of the brain which then reduces the seizures.
As Asher does not have many drug options left to try, her doc wants to make sure we are not missing anything.
So the goal now is that Asher have seizures so that they can see what's happening in the brain. The plan is that on Tuesday morning she will miss her medication and they will control how much she gets from now, basically reducing it enough to get the seizure activity happening.
It's a scary thing to go through but God has given us His peace and blessed us with a very good neurologist who is very careful and caring. She is in good hands. Both physically and spiritually.
So specific prayer requests now that it's set up (and she is not trying to pull it all off) are:
That she would have enough seizures for them to see clearly what is happening in her brain through them.
That God would keep her safe through the seizures.
That her body doesn't get too comfortable in a seizure state (That she doesn't have too many or have a cluster that won't stop).
That the EEG connections don't need to much extra gell added, or that if they do, that Asher would cope with the work they need to do without knocking or pulling the cords.

Thank you all for your support and prayers through this all.

Monday 12th: The first step was to sedate Asher so that the technicians could put all the leads on.
She had to drink some medication and then had two injections in her legs. They explained that the liquid meds would help her to not remember the injections.
Her neurologist was there and wanted to show Brendon the MRI pictures that she had on the 1st, so a nurse held Asher for a bit.
They measure the head and mark the exact spots where the electrodes need to go.

Brendon took over holding her. The worst of this was the horrible smell of the glue.

They wrap her head up so that it's less tempting to fiddle with the leads. They are also wrapped together at the back and then go into the little machine in the black bag (which Brendon then had to carry around behind her whenever she moved around).
Her doc had said she would sleep till 1, but she ended up sleeping till after 3pm. She would wake up, want to play with something, and then just fall asleep again.
An answer to prayer was that she didn't get stressed with the stuff on her head when she did wake up. She did not try pull it off (or even fiddle with the bandage under her chin). We are so very thankful.

Her neurologist discussed the plan of how they would handle seizures. Specifically having a plan for longer seizures or really bad clusters. As they may even get her totally off her medication, they want to know they can also stop things if they get just too much. So he wanted a line put in, so that if hey have to, they can give intravenous medication quickly. Thankfully Asher was still asleep enough for them to do that without her resisting (or feeling any pain).

She didn't seem to stressed about the bandaged head or arm. What an answer to prayer.
Happily using her iPad with her left hand.
One of the biggest hassles with the line in her right hand is that she can't feed herself well, so Brendon is going to have to feed her most things.

This evening Hezekiah was doing his "home work" and Hannah always enjoys watching him. It was great to see him allow her to sit next to him to watch. And at one point he needed a bit of help, and she could help him out.

Tuesday 13th: I had an appointment in town this morning, so I headed to the hospital for a visit once I was done. Asher was so pleased to see me and I got such a long hug and cuddle with her.
I took this photo so that you could see the set up, from her head to the bag, and then the grey extension cord to the wall plug.
Her neurologist was pleased that I was coming in as he was then able to show me the pictures from the MRI as well. There is one small area of her brain that is showing some abnormalities. It was good to know that it is something that has been there all along, just not visible on the 6 month old MRI as her brain wasn't developed enough. They don't expect the area of variation to grow or spread.
I think we were all pleased that we had arranged this week of investigation. It will now be very interesting to know if the seizures are coming from that area or not.
I had such a good visit with them. I got some lunch from the cafeteria and just enjoyed visiting. The play room specialist also popped in. Brendon and Asher had gone to the play room as soon as it opened on Monday morning (before she was wired up) and the lady recognised them immediately (from the MRI visit). She knew that Asher liked balls, puzzles, sorting and stacking toys and this car ramp. Brendon was amazed and asked how she could remember so much as she must see hundreds of children. She said she remembers playing with Asher and enjoyed the time so much. It made a real impression on her.
The lady came every day to bring Asher some new toys. While I was there on Tuesday she was playing with Asher with a big ball. I would have loved to take a photo but I was chatting with her neurologist.
Brendon was also so thankful to the nursing staff. They often gave Brendon breaks to go shower or get coffee. They were really friendly and helped the week go well.
While I was there she had her first seizure (at around midday). She was on the chair (pictured behind her) and I was just trying to give her medication to her.

She was not wanting to take it (which is unusual) and then had a really big jerk. She climbed off the chair and then the seizure started. So I had her in my arms and she didn't fall. I then put her on the bed and tried to make sure I was out of the camera's way so that they could see how the seizure was affecting her physically.
She had a sleep afterwards but then ended up pacing a lot through the afternoon. It's horrible to watch her when this happens, but we were also really glad it did happen, so that the neurologist can see what's happening inside her brain when this happens.
Wednesday 14th: I love how Anakin cuddled up with Ruth this afternoon.

Asher's pacing didn't really improve through the evening and she had another seizure around midnight.

She slept till around 1:30 and then woke and was very uncomfortable. She was having big jerks and if she was home she would have been pacing. This continued till after 4am and then she finally fell asleep. She was woken at around 5:30 with a huge jerk though and then was pacing terribly. Brendon was eventually relieved when she had a seizure at 6:20, as she could then finally sleep and have a break from it all.
Brendon was exhausted from such a hard night.
This was my facebook update at this time:
Just to clarify - what Brendon has dealth with over the last 12 hours is something we were dealing with more and more regularly before we increased her medication (eventually doubling every dose). So although it's not unusual, it is so very hard. I became emotional just hearing Brendon discribe it (as I can clearly remember what it was like when I had to deal with it at home). It's heartbreaking to see her going through this but we are so very thankful that this "strange" stuff is happening while she is hooked up. It will help us to fully understand what is actually happening.
As a friend said: the data collection is invaluable, but it is so hard to go through. We are glad the doctors will be able to see exactly what's happening through these times. She is not talking and isn't interested in eating either. At least right now she is restful and lying watching movies.

Anastasia is 3 months old already. It's hard going through those first months with a baby who struggles with colic, but looking back now it's gone quickly.

Pulling herself forward. From all the exercises she does with Ruth. :-) Ruth would hold her hands and gently pull her up into a sitting position. Now, as soon as you hold both her hands, she starts pulling herself up. So she was just showing off for the photo shoot. :-)

Cutie pie.
Thankfully she has put on a bit more weight in the last 2 weeks (first two weeks of the month was hardly any) and she now weighs 5.3kg. She is getting taller and is now 60cm tall. She started off at 3.4kg and 52cm tall. So not rocketing up, but she is getting there. And as the Plunket nurse keeps saying to encourage me - don't just look at the scale - but look at how wonderfully she is developing.