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.

My turn for sickness

One extra strength hot toddie.
One bowl of salted caramel and banana ice cream.
New teeny tiny knitting needles. 
Next episode of Versailles.

Abbey has shared her cold with the family. She is now super bright and bubbly, ready for action. Obviously feeling much better.

I’m ready for bed

I dont know how you do it

I’ve been receiving a few comments along the lines of ‘I don’t know how you do it’ sentiment lately. I generally don’t know how to respond.

Should I go into depth about it? 
Should I just say something funny or dismissive?

I don’t know how I do it, it just has to be done. But I can tell you most days, it’s not being done. I’m just scrapping by as life throws all of its curve balls at us.

But maybe you would like to imagine what it is like?

This is my best attempt at it.

Imagine a 6 month old baby and all of their care needs. That is my Abbey.

Imagine your child is unwell, everyday for nearly 13 years so far. That is my girl.

Imagine everyday their life is at risk with every seizure and you need to run to get to them 10 times, no matter whether it’s night or day.

Tired yet?

Now put them all together. That is what needs to be done. Every Special Needs Parent has some version of this.

For us, add in 3 boys and their needs and our own marriage and jobs.

Priority is family. Priority is mental health.

Come the end of the day, some chocolate cake goes down very well! Thanks to another amazing mum for this gift!

Chaos

We are full steam into the chaos!

Midnight vomits, missing pump machines, drug changes, seizure weirdness and the normal family needs.

Abbey is not wanting to engage the past 2 full days at hospitals and doctors. She is also unwell with a cold. It’s long days in a wheelchair waiting to see the next doctor. Today she has been jabbed 3 times for bloods, hormones and flu vaccine. She survives with massage and a comfy bunny to sleep on.

Mum and Dad survive with exquisite organisation, coffee and secret hand holding for support as we watch our daughter manage this unfair load.

Tonight we will take a family moment with make your own pizza and a movie.