Happy 6th Birthday Asher

Rachel made Asher this beautiful cat cake for her 6th birthday today. Her birthday is tomorrow (Saturday), so we decided to celebrate today instead so she could share her cake with her class.

We always try to get a photo with the birthday child behind the cake. It was a bit more of a challenge with Asher. When she sees me arrive at school she automatically thinks it's time to go home.

A nice photo with her class.

And then when they started singing - well it was just beautiful. Her face just lit up.
She always loves singing Happy Birthday at church, so we know it's a song she loves. 

Taking an opportunity for more photos in the afternoon when Dad got home. And why not light the candles again. She enjoyed the singing so much in the morning we decided we would make her happy and sing again for her.

Such a special photo.

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 much....so strong ....I think this is the most beautiful smile that I have ever seen....it is a strong smile....a smile of one who overcomes .....who she is makes her smile the most real smile on social media ....it is not an empty silly muscle movement for a camera...it 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 drained....secure 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 ....it just inspired me in ways that speeches or sermons fail to do ....it was not noisy...it was silent but said more than words can say ....
It was not a silly muscle movement for a camera ....it was a... real smile that had to be dug out of the depths of a soul that has been through so much....it 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 fray....it 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.

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.

Happy 4th Birthday Asher

Celebrating a week early, but that doesn't matter. Happy 4th Birthday Asher.

I really enjoyed making a Dorothy the Dinosaur cake for you Asher. You do love Dorothy so much and it was so nice seeing how happy you were when you saw your cake.
For those who don't know Dorothy, she is one of the characters in the Wiggles. Asher just loves The Wiggles. One of her favourite songs with Dorothy is when she does a ballet dance.

Rachel and I then went down to the preschool at 10 to take the cake for morning tea. So nice for Asher to have a big group of children to celebrate with her (and sing to her).

She was a bit quiet with the singing (she normally sings along and enjoys Happy Birthday - it may have been because she knew it was for her this time). Thankfully she did give me a smile so that Rachel could get this photo. :-)

Blowing out the candles.

Happy 3rd Birthday Asher

On Sunday afternoon we had an early celebration for Asher's birthday (which is on Tuesday).
Trying to get all of them to smile.

Hannah copied the funny face that Dad was making behind me. Such a fun photo.
Rachel and Ruth holding Asher's hands so that she didn't grab Humpty. She just loves Humpty Dumpty and it was wonderful seeing her reaction when she saw the cake.
Trying to blow the candles out. Thankfully Hannah and Dad helped. She understand blowing, but often puts her face right into things (like putting her forehead onto a flower - rather than just having her nose close to smell).
I made two loaf sized cakes on Sunday and popped one in the freezer so that we could do a 2nd wall on Tuesday afternoon for Champion Centre on Wednesday morning. It was nice to get a 2nd chance at the wall. I felt I did a much better job of "drawing" the bricks. We also had a bit of extra time to create some yellow flowers. Ruth was my flower maker.

And I had fun creating a little arrangement at the candles. I was really pleased with how much those little things added to the whole picture.

I especially liked how Humpty Dumpty's legs and arms worked out.
It was lovely that we had this "2 cake" week as Humpty sat in the kitchen between Sunday and Wednesday morning and Asher just loved looking at him. Every time she came into the kitchen she would look at him and say "Hu" (for Humpty) and look at me with a big smile.
Morning tea time at Champion Centre today was birthday cake time.
They sang Happy birthday in English and then in Maori (as there was a Maori family there as well today).

Blowing the candles didn't go much better today (that forehead getting a bit close again).
It was lovely to be able to celebrate with everyone at Champion Centre today. And there was enough cake that the rest of the staff got to enjoy some too.