Update Marijuana oil trial

After Abbeys last neurology appointment we have decided to continue for another three months. She is still experiencing hair loss and gastrointestinal issues which when first mentioned to the medical team, they were surprised and not sure if due to the oil. Now we know another child has hair loss. Why? They don’t know.

As for the gastro issues, this is more complicated. Abbey will be going under a general anaesthetic soon to check her insides. It’s common for kids with CDKL5 to develop intestinal issues around the teenage years. We want to see if we can stay one step ahead for the first time, having some idea of what she is heading into.

The seizures continue to evolve and frighten me, to be honest. Today my girl had 2 big seizures in a row. It’s a first, and I was battle stations ready for hospital. She is ok.

But…

She continues to defy ‘them’ all. My girl reaches out to be cuddled. She loudly protest when hungry. She will walk with assistance. My girl continues to make huge strides forward given all that is happening.

(By huge strides, it really means very small steps in development. It’s consolidation of previous development. For Abbey and her family, we celebrate every massively tiny milestone. Today it was clearly advising she was hungry and ‘talking’ about it for a while after, ensuring we understood she was hungry and we were too slow.)

Photo: Given it all, I’m working on ways to shift the brain to another state. It’s hard to find comfort or escape in quiet activities like knitting or reading at the moment. I’m needing to switch the brain to something new. I’ve taken to cooking recipes that take my fancy, to the benefit of those around me. Last week was pumpkin and pomegranate cake, today was popcorn health balls. Bloody sticky mixture.

Going out to parties

Last night we were invited to a friends birthday party. How exciting it was that we were available and everyone was well to attend. We had a fabulous night meeting new families, while taking a moment to stop.

Abbey partied for a short while but then fell into a very deep sleep with lots of seizure activity. Our hosts provided pillows and a warm doona for her. We stayed longer than we thought, so didn’t come too prepared.

Given her situation, James and I played the parenting game, Changing of the Guard. Abbey was showing all of the signs for a big seizure, so we could not leave her side. While one of us chased boys, refreshed drinks or food, the other stood/sat by her side. Then we changed, to give the other a break from watching and socialising.

All up it was 4 hours of socialising and parenting. Today we are exhausted. We are noticing our need to have more recovery time to be able to keep going. At times it’s shocking to the brain, where this is taking us. It’s unchartered for us, but we are learning to go with the flow.

24 hours of CDKL5

24 Hours with CDKL5 Seizures

Abbey has a very rare gene mutation called CDKL5. Like all rare genetic diseases or disorders, it can be hard to explain, to relate or even to share. So let me share what the last 24 odd hours looked like for Abbey, and as a consequence her family.

630am an extremely rare sleep in. Abbey is chatty and giggly.
7am getting ready for the day. One vacant seizure.
8am her new best friend, Alison, arrives and I’m now not needed or considered.
8 to 12pm Alison notes 2 vacant seizures, lasting 5 to 7 minutes plus 2 jerks.
12 to 2pm is lunch and preparing for the next day. Abbey is a bit tired and sleeps, some subtle seizure activity while sleeping.
2 to 6pm is family time watching a movie and discussing our solar system. Abbey is still very tired and a little spaced out. We are watching her closely.
Bedtime, she is still not quite right.
10pm large seizure with breathing difficulties.
2am large seizure with breathing difficulties
4am she is awake, ready for the day. We are not.
5 am we get up.
530am we get Abbey up, followed by 1 vacant seizure and a jerk.
8 to 10am Abbey is Home with me and note 3 vacant seizures and 3 very big jerks. Brain and ears are working overtime listening for the next subtle movement or sound that indicates a seizure, while I work and do household chores.
10am I give up trying to get anything done and we watch High School Musical 3 and knit while I wait for reinforcements.
10am to 6pm reinforcements are here, but I’m still tuned in waiting.
6pm bed for my girl, and down time for me before another unpredictable night.

Total seizure count can be up to 20 a day at the moment. Some days it can be one seizure that lasts 6 hours. This is one part of CDKL5.

Heart is very heavy

It has been days of meetings regarding seizure management plans and palliative care. It never feels great to share on these days as the heart is very heavy.

The heart is still heavy, but we have a priority on making it lighter. Working towards a new normal and minimising the influence of the outside world until we can join it again.

Even Abbey is a little over it, stopping half way down the hallway to rest while walking.

Right now I’m forced to stop and relax. near Flinders Street Station in Melbourne on a green patch outside the church, where I keep attracting the alcoholics to share my green space.

Days like this don’t exist.

Some nights when I come to do a #365CareAbbey post, I just shake my head in disbelief, as it’s the sort of post I would read and think ‘sheesh that sucks, I’d hate to be in your shoes’.

Today is one of those days. Actually it’s not even ‘one of those days’ that just drags on or nothing goes right. It’s a day you spend trying to get answers to questions that won’t be answered…..while keeping your cool and coming across intelligent and altogether.

A day spent advocating for my children at both their schools due to a situation that does not fit policies or tick boxes. I’m working through it, but honestly there are too many tears. But my voice, my child’s voice and my family’s voice will be heard. This is what drives me forward.

And as I end the night my girl has a change in the big seizure presentation and our driveway has lost majority of its integrity due to a storm just gone through.

Tomorrow I will assess damage of the driveway as I take Abbey up to meet the bus, check emails and start again.

To all of the parents who had ‘one of those days’ plus a bit more, I salute you.

We all deserve peace

A special needs parents journey is never smooth. No matter the disease, illness or disability, it forever follows an unknown journey. We can only provide the love, support and advocacy for our child to make the journey for them that is peaceful and smooth. As a consequence we, the parents or carers, take on the burden, the sacrifice and the sadness that comes. And we do it because we know that life is beautiful and we want our child to experience that beauty.

Today was the one of the hardest day in our journey as Abbey’s parents. Today we had to advise our wishes for resuscitation for end of life.

It’s a horrible experience. We knew it was coming. It’s important to make it easier.

She is our daughter, she deserves peace at all stages of life. And we all – all who share in her life journey – deserve a peaceful end, whenever that may be.

Where is the wine when you need it?

Some days in a carers life are huge because you receive news you were not expecting, or some thing happens that shifts plans or dynamics. Or if you are really lucky you are ‘blessed’ with both in one day.

Today was a Hugely Bless-ful Day.

It was going to be a busy day anyway.

I went grocery shopping, which I have not done for 4 months. Still not an exciting event!
Some blood tests to check up on my health.
Coffee with my special friends who are just like me, coping with the crazy.
We have a new oven and range hood that James is installing.
James has finished the front wheelchair ramp. (Photo soon).
Plus general mummy stuff.

Then the news… one of our favourite carers will be moving on. For special needs parents this is the equivalent to a punch in the guts. It shifts your world. But it’s bittersweet as we have seen many carers going onto bigger and better careers and the joy they have brung to our lives.

Then the event … Abbey has her first big seizure while awake AND walking with assistance. Watching closer now as it’s a little dangerous for her and carer to catch Abbey. We need to think about safety when assisting her to walk, while encouraging her towards independence.

Sooooo it’s been a very huge day.

Sheesh, where is the wine?!

Photo: there are a few holes in the kitchen. I have an empty wine glass. I have looked high and low. Might need to go the whiskey!