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.