Friday, February 16, 2018

VEEG info and a 5 year old

Thursday 15th: This was my fb update on this photo.
Such a HUGE blessing to see this smiling face this morning.
She didn't eat or drink yesterday (except 3 tsp of jelly) so they put a drip up last night much to my relief. Unfortunately the alarm on it went off every 2 hours, so Brendon didn't get much solid sleep.
She hasn't been talking and has really been struggling. This morning her neurologist said he was happy with how much info they have gath...ered. Even though only 3 big seizures, there has been SO much neurological activity. So they gave her a double dose of meds this morning and will get her back to her normal dose for the rest of the day (that's why she is finally smiling and feeling better - even ate a couple of crackers this morning).
The goal now is to make sure that she is stable - and that this improvement lasts (with other doses of meds, she would improve for just a short time and then deteriorate quickly again).
If all goes well they will take the electrodes off tomorrow morning and if she is stable, they will come home.

RIGHT: Hezekiah showing me how strong he has gotten on the monkey bars at school.

A friend of mine made this comment on Asher's photo:
This little soul has been through so strong ....I think this is the most beautiful smile that I have ever is a strong smile....a smile of one who overcomes .....who she is makes her smile the most real smile on social media is not an empty silly muscle movement for a is some strength found deep within that shines out of a strong little face .....what an awesome human this child is!
I was so moved by her comment and then later she shared in more detail on her own facebook timeline. She tagged me on it - so my facebook friends would have been able to read this too. When I read this to Brendon I had to stop a few times as the tears were flowing.
I want to record it here (as things aren't as easy to search up on my fb page as on my blog). It is such an encouragement to know that God has purposes in Asher's life that we are not even aware of.
She wrote:
Yesterday I felt a tad in hope and trusting in the Flow of it all, but a tad drained....
Today, I smile at what kind of things inspire and re-energize me....real things, free of facade ... today, it was the smiling face of a child, whose head is bandaged up just inspired me in ways that speeches or sermons fail to do was not was silent but said more than words can say ....
It was not a silly muscle movement for a camera was a... real smile that had to be dug out of the depths of a soul that has been through so was strength that reshaped a bandaged head into a lamp of a smile....a silent sermon on overcoming from one who lives by overcoming....a soldier in the body of a tiny girl child....a smile that just inspired me....
A large soul in a tiny body can have a huge purpose of inspiring others ....
Over years I have caught glimpses of this child fighting for a quality of life....never giving up ....smiling in between running into the fray for another hospital session ....
This huge soul in a fragile body has been an inspiration to me ...when her parents post that she is in hospital yet again...I just say..." Once more into the will be okay" ....not knowing anymore whether I say it to inspire her or myself ....for she is an INSPIRATION!

Over the last month we had been wondering what was going to be built next door as they started on the foundation. This week the frame of the cottage went up. And so quickly too. Coming from South Africa where everything is made of bricks, it is really interesting seeing the process of building a wooden framed house.
Hezekiah and I off to fetch the eggs this afternoon. He decided to try a Ice Cream Sunday today, but the cream on top was too rich. We had a great time chatting while we ate and then the chat on the trip home was all about what he would try next time. :-)
The children wanted to go for a swim (even though they swam at school today) and so Rachel was a star and watched Anastasia for me so that I could take them up and enjoy some lengths myself. We had the pool all to ourselves.
Friday 16th: As soon as I had dropped the children off at school, I headed into town to fetch Brendon and Asher.
I couldn't put Anastasia down quick enough as Asher just wanted cuddles from Mum.

It will take a while to get all the glue off her head and out of her hair.

Thankfully I managed to find parking relatively close to the hospital and arrived just after her neurologist. He then took us to the room next door to show us some of the records that he had already looked through from this week.

We looked through loads of pages and he explained a lot to us. At then end I took a few photos of some of the pages.
These first two are the same 10 seconds during her seizure on Wednesday morning at 6:21am. I'm sorry I didn't get a photo of  "normal" one but I think it's clear to see how much activity there is here.
He adjusted the settings (sensitivity above is 15, where this one is 47) so that it was easier to see what was happening. The key thing that is noticeable is that the whole brain is effected. And although I didn't get a photo of the start of the seizure - it was very similar. It did not start from one area and then spread.
Sensitivity sill at 47 here, so that they can see exactly where the biggest spikes are.
Her neurologist also spoke to us about her "normal" activity. Children here age would typically be functioning with brain waves around 8Hz. Asher's are more often only at 5Hz. So her brain is slower. This helps us to understand why she takes so long to learn a new word or why it's so hard to join words together.
Sensitivity back to 15 now, and the end of the seizure shown. You can clearly see the Tonic Clonic part of this seizure - with the darker, big spikes showing the Tonic (stiff) part and then the Clonic in between (where the muscles relax).
It was helpful to get confirmation that when she is "pacing" and we see the discomfort on her face - it is indeed related to seizure activity. Even when there is no visible sign of it (like jerking).
We will get a detailed written report in time. It will take many hours to go through it all.

Her neurologist spent many hours this week researching possible drug options for Asher to try (as there are not many left). We had one lined up to start, but he has found some research that indicates it may not be the best fit for her type of epilepsy (as it may cause more seizures). So he has suggested a different drug. It's not used often (he has only used it once 12 years ago) but the research is very positive for her condition. We were happy to give it a try.
As it's not a "normal" drug, he had to apply for funding for it specifically and our pharmacist will have to order it in. She should be able to start it by the end of next week.

It was so nice to have Asher home on her birthday. Thank you Lynda for her gift.

Although Asher doesn't understand that it's her birthday or what the purpose of presents are, it was still nice to sing for her and help her unwrap her presents.

We did the first clean (with special wipes) and wash of her hair this afternoon and it's already looking much better.
They had a singing assembly today (parents don't attend) and Hezekiah came home with this certificate for "working hard on his independent writing and producing some great stories."
Hannah also got a certificate for "working hard in your maths and accepting new challenges".
Well done to you both.

We only just got back home a couple of minutes before the children finished school, so we went straight there. Even though Asher has missed her school visits this week, she happily went into her classroom to where her "box of toys" is and played for a bit. Although something simple, this was a real encouragement to me.

Wednesday, February 14, 2018

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.

Saturday, February 10, 2018

Swimming progress

Hezekiah wanted to show me what he has learnt this last week during his swimming time at school. So we headed up to the pool this afternoon. Hannah got to show me how much she has improved too.

It was amazing to see him happy to put his head under the water like this.

He had told me that he had touched the floor of the pool. So he showed me. I'm so pleased he has gotten over that fear of going under.

Seeing Hannah dive so nicely he wanted to work on his dive too.

And his freestyle is coming on so very well too.
Well done to you both.

Friday, February 9, 2018

Tabloid sports fun

What a beautiful day for Tabloid Sports.
Once Anastasia was awake and fed, I left her with Rachel and brought Asher up to watch the fun and games.
Above: They had a break just as we arrived and the water was sprayed up to allow anyone to cool off under the spray.
Then we spotted Hezekiah and Ruth with this challenge.
Then we saw Hannah at the tire tower challenge.
Good job Hannah.
Then we followed Hannah to the tug-of-war. At first they had to pull with water praying their feet. A really muddy tug-of-war.
And then they moved onto the dry grass and had a really good challenge with as many on each team as they could get.

Then we managed to find Hezekiah and Ruth again at their next challenge. Hezekiah had been looking forward to this one.
Scoring his goal.
Good job Hezekiah.
Then it was Ruth's turn. Well done for keeping up on that slippery surface. It's always fun that Ruth can wear this blue tutu from one of her dancing concerts as she is in Taylor - the blue house.
I dressed Asher in blue too, to support Taylor (and I had blue on myself too).
There wasn't any activities I thought she would be able to join in on, but it was good to have her there to watch some of it. As we were walking from the car she had seen all the children on the field and waved and say "hi". So that was already an encouragement to me. I still remember her first visits to preschool - and she didn't even notice the other children.

I was also pleased with Hezekiah's involvement today. Last year he had not enjoyed the tug-of-war and was a bit nervous about doing the challenges today. But he tried hard at them all and enjoyed the afternoon.

And as a nice end to the day, Taylor ended up winning overall.

Thursday, February 8, 2018

First school visits and a birthday cake

Wednesday 7th: Asher's first school visit today. Just for the morning. Unfortunately she had a seizure on Tuesday at 4pm and then another one this morning at 7am. Thankfully nothing while at school, but another one at 6:30pm. So a rough two days neurologically.
Thankfully she was pleased to see her box with familiar things, and enjoyed playing with them all. She wasn't looking great and I wondered if we would see another seizure in the morning, so I asked Rachel to bring her cake for morning tea, rather than waiting for lunch.
Rachel went to a cake decorating course on Monday evening, so she did this cake for Asher. It worked out well to celebrate with her class today.
Beautifully done Rachel.
Happy 5th Birthday Asher.
One candle hidden behind the horn (I didn't think about that). It was nice to have her class sing for her and get to enjoy her cake together.
I ended up staying and helping with keeping her distracted till around 11. I was then able to head home for a bit before picking her up at 12:30.

She will have her buggy at school too. This is another "safe place" for her. She had some morning tea while in it this morning. I need to just bring her tray next time and then she can even do a bit of "work" in there too.
The day went really well. Much better than it could have. Rachiel (her Teacher Aide) also commented on how well it went. We had both been prepared to potentially have a lot of screaming and even hitting - but she didn't do either. So wonderfully successful from that side of things.

BELOW: Nice to get a 2018 School photo of them all this afternoon.

Hezekiah's art that he brought home today.
Rachel did some shopping on Monday when she was in town. She spotted this pillow and thought of Ruth. Ruth had mentioned before how she loves these - with the little sequins that can be pushed two ways (so either a white background with a gold dear - or a gold background with a white dear). So thoughtful of Rachel.
Rachel and I headed off to do the egg collection this afternoon. It was nice to get out and spend a bit of time chatting.
A neighbour brought this cake as a "birthday" cake for Anastasia. She apologised for it being "late" but it was actually perfectly timed. Asher's cake was provided in the course on Monday, and so it was not Gluten Free. This cake is GF though, so it was nice for everyone at home to have some cake.
Thursday 8th: Another morning school visit today. And it went so much better.

They have "fitness" first thing in the morning and so we went outside with Asher. She ran over to where all the children were playing catch. Hezekiah spotted her and even tried to help teach her how to play. It was very special to see.

Her teacher suggested chalk for outside, so once she had lost interest in their game I got her drawing with the chalk (using "Wheels on the bus" song - which she often "draws" with at Champion Centre).

Her teacher also got some balls out which worked well and then gave Rachiel some bubbles. So she had a few different fun and familiar activities outside which was a great help.

The primary head teachers in the class on Thursday mornings after morning tea, and she gave me this encouraging feedback:
"We had a shared writing session on the mat, and I wrote a story about Asher being at school, and then asked a student to come and draw the picture to go with the story. Asher then also on her own accord, came up and took the pencil and also contributed to the story by drawing and making dots. She did this on more than one occasion and it was delightful to see."

We are all so very pleased that she is settling in so well and already starting to look at what the others are doing and even joining in.