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.

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