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.

To not worry

Its hard to write something inspiring or positive when you just want it to stop, just for a moment. A moment of no worry for my girl.

That worry infests so much of our lives. She has been very ill since the procedure, and continues to be. It is scary seeing her body working hard to fight the virus that has also infected her parents. We are over the virus in a few days, Abbey is looking at 3 weeks.

She has been so lucky with minor illness this year, just the odd snotty nose. But this, this is scary. Her body does not react like ours has. Back to the doctor to check all is ok, again … her lungs are clear, the virus is moving on.

The experience has us thinking how to cope with the next one. What do we need to change so that it will be easier? Honestly there is not a lot, its more about being ok reaching out to our network to ensure life can keep moving along for the boys and our own respective jobs.

Reaching out has been hard this time, as we are asking more often. Its primarily getting the boys to places they need to be, including school and Scouts. Abbey cannot travel when she is this ill and we need to be present in case. The boys understand if we cannot find a solution that does not overly inconvenience another, it just won’t happen.

Im now resolved that there will come a time when the boys may need to be home schooled with the assistance of their teachers, as we need to be together as a family or they need a break from the outside world.

Its all just moving a little faster than we would like.

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!

Resilience

t’s the development of the resilience muscle that gets any special needs parent through the never ending hurdles. When we think we cannot take anymore, we learn a new strategy to cope. We become exquisite at knowing when the resilience muscle is loosing strength and flexibility. Most times we are so caught up in it all, we miss the signs and at other times so much is thrown at us that we just hope it does not snap.

Right now, I know my resilience muscle is close to snapping. Too much has been thrown at us to deal with it all at our best. From Abbey still recovering but getting better to James coming down suddenly with the flu, camp preparation for Dan and a work expo for the business all this week … I’m just shaking my head.

So we are aiming for making the best of it all. Putting into place contingency plans in case Abbey goes downhill, others become sick and ensuring our plans made months ago will come to some sort of fruition for the family and business.

I’m working on getting some strength and flex back into my resilience muscle.

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.

School excursions

Day 193

I joined Abbey on a school excursion to the Queensland museum. There was not a lot of interactive displays for her, apart from this ‘crab pool’. It’s a motion-sensored light display. If Abbey tapped her hand, it caused ‘ripples in the water’. We stayed there for nearly 40 minutes chasing crabs and making waves!

It was magic.

Adapting

Activities I dislike doing, but need too when I know a big seizure is coming:

Showering
Brushing teeth
Sleeping
Checking the mail
Being on the phone
Gardening
Cooking

Why?

Because I cannot hear her, cannot get to her fast enough or it can be dangerous (I managed to melt a microwaveable vege steamer a few weeks ago).

Sometimes I’ll brush my teeth in her room.
Sometimes I won’t answer the phone.
A lot of the time my garden dies from lack of attention.
Sometimes I hand bathe so I can hear her.

Adapting is key.

Rangehood holes

Today 2 more medical appointments came in for Abbey. There are a few more days gone to driving, waiting and brain strain. It’s no wonder we just cannot get to small jobs around the house.

It’s ok now. I use to become very frustrated as to why we just cannot get stuff done. Now, I know. It’s what we do to manage our family that is priority, everything else is second. 

The holes around our new kitchen exhaust fan are many months old. Instead of being a reminder of what we should be doing, they have become a reminder of the joy and family time we prioritised today.

It’ll get done when it moves up the priority list or we find ourselves with nothing to do one day! Those days will come, but I don’t want it to be soon. I’m happy to wait decades, because then I know Abbey will be with us.