Red noses and seizures

The only way I will post a pic of my girl is in black & white. Imagine a bright red nose from another cold virus that has taken up residence.

2 days ago my sweet cherub had 6 big seizures in a 5 hour period. She recovered well but I could not find any reason for it.

Yesterday she was just not quite right.

Today she is uncomfortable with the runny nose and gagging from the dribbles. At least now it’s a virus, and nothing more sinister. And an explanation for the run of seizures. (For those keeping track; a bit sick means more seizures, a lot sick means far fewer)

We are both getting tired from the long days.

Marijuana oil update.

Abbey has started the process to come off the oil. Reason? Gastro system is in turmoil and seizures are worsening. She is being weaned over the next few weeks. We watch closely as her system adapts.

Abbey is also not responding well, we think, to the meds to help heal her tummy. A lot of reflux vomiting and issues ensuring her food intake is adequate. More investigations to come.

There is a lot of flux at the moment for Abbey. As always, a big question mark hangs over our heads.

Photo: still being cheeky.

Seizures and illness

Seizures are back!

After 6 days of no big seizures due to illness, we know she is on the mend when the big seizures reappear. We think she had the flu along with post anaesthetic complications.

Now the smiles and giggles appear, making for happier days.

Why this occurs? No one can tell us. It’s a great indicator though on her well being.

Go Abbey!

Hospital queues

Today we are spending the day in hospital to find out what is happening to Abbeys gastro system. Here we wait for the VNS to be turned off before heading to the procedure room. Abbey will be going under general anaesthetic. I have started a newborn wool cover for cloth nappies. Let’s see how much I get done! I’ll post through out the day as we advance along the waiting queues.

13 years old – we made it

13 years old today.
13 years.
We never thought. 
It’s hard to process we have come this far.
This is not only a celebration of Abbey’s birth day, but an acknowledgement of how far we have come and what has been achieved.
Now we party this weekend with friends who have become family.
She is joy.

Own the moment

One of Abbey’s greatest gift to me is learning to own the moment.

This photo was taken recently at school by her teacher. It is one in a series of 3 photos that were presented to me by her teachers as a Mothers Day Gift. Upon seeing them, I felt terribly sick, then heartfelt sadness, then overwhelming joy. From a flitting moment of what life could have been, to what life is, to ‘OMG she is just gorgeous and she is MINE’, all in a second.

Abbey lives in the moment, but more than that she owns it. If she is happy, she lets everyone know, and calls out for people to come join her. If she is sad or upset, she lets us know that she needs help or comfort. If she is tired she sleeps. She never is passive in a moment; she owns it and invites others to join her (or tells us to nick off in none-too-subtle terms so she can be alone).

This gorgeous photo shows a moment in which the seizures were not present, she was loving standing up against a wall and she was with her favourite people. She wasn’t just present, she was taking control and milking it for all that she can for her entertainment.

And that is where we, as a family, are at. Owning our moments and choosing joy wherever we can.

Out of our control

When I first took on the challenge to share a photo a day in my life of caring for Abbey, it was easier. We were in the place of fighting for her future. Education, medical rights and advocating for the needs of our family were priority. The day to day highs and lows were numerous and easy to share.

Strangely this has not changed, but the way in which I view what is important has. Previously I was concerned about making a change, trying to make it better for others through highlighting what makes it hard for us. Now it’s the emotional journeying knowing where this palliative journey will lead. We are more focused on building a resilience within ourselves and the family as a whole.

This means those situations that are out of our control or we cannot immediately influence have dropped in priority. Now we share our spare time together, doing what we love to do as a family or individually.

Today it’s enjoying Avengers: Age of Ultron in spurts around the caring of Abbey, medical discussion, housework and cooking again. It’s back to simple joys with our family. Nothing is more important. Nothing.

Decisions

For any special needs parent, there are times we must make the decision to follow a course of action that is the lesser of two situations that are not ideal, but one has to be slightly better. We hang on to the hope that it has to be slightly better. It just has to be.

Abbey started a new medication 6 weeks ago as the big seizures were very strong leading to aspiration. Over this time we have seen a gradual increase in seizure number and length of a seizure. But the intensity of the big seizure is slightly less and a reduction in seizures that cause aspiration.

Abbey is tired from the increase in seizures. It is rare any one in the family gets a full nights sleep due to seizure activity.

Tonight we make the decision to come off the new medication. Our goal is always quality of life for our girl. We miss her giggles, her cuddles and her constant nattering.

We hope we are making the right decision. We will not know the consequences in a couple of weeks.

We watch. We wait. We cuddle.

Im more than a nurse

The palliative journey is about coming to terms with so many things. This journey has a physical and tangible ending. It’s only started to sink in emotionally the past few days.

I know what the ending is, you all do too.

But ….

I’m Mum more now than Abbeys nurse or carer. My roles are changing up due to our new carer, Alison who is willing to take on morning and evening roles. Now I’m not solely caring her Abbey.

Now I can take a moment for an extra cuddle, kiss or chat with my girl. In having these beautiful moment, I’m starting to realise my role as Mum will end too.