Sunday, September 27, 2015

Helping Hands trip...

Arrived in London on Friday. Wow! What an intense week Tuscany was...

One of the many benefits of these OS trips is the many challenges one faces when they leave their house with a severely disabled child. There are so many more challenges than anyone could ever imagine before they left home.

The OS journey has me problem solve, find new ways to do things and build up resilience. It makes it far harder to argue for staying home from a visit to the Westfield on a regular Saturday afternoon (10 minutes drive) just because I am tired ... if we can make it all the way to Tuscany!! 

I have planned this trip for months and yet on the third day of the physiotherapy with Tereza we had both a breakdown and a meltdown! I returned from an hour or so of the yoga training, just a few minutes walk from where we were staying. I found Tereza sheet white and angry. Not with me or with Sierra, but from what was a BIG day. Sierra had choked, had big seizures, spat out nearly all the food she had been fed and then angrily tried to eat the spoon out of Tereza's hand due to hunger and probably dehydration. 

I took one look at Tereza and knew she needed a break but it also kicked off my own realisation (yet again) of ALL that Shane, Sierra as I deal with on a daily basis. It's always stressful, it's often life or death and Sierra's need for care and focussed attention is relentless. 

I started crying, sobbing in fact. Thank goodness there is somewhere in the world that was safe enough to really 'go there'. I cried for about 24 hours. It just kept coming in waves. Seeing Tereza's face had been like looking in a mirror.

Then the crying came to an end...(for now)

Tuesday, September 22, 2015

Helping Hands trip...

Both the therapists I have flown over from Prague last week and now this week have been working with children running Hippotherapy camps for many children and families.

"Hippotherapy is a treatment method of physiotherapy (rehabilitation) which uses a specially prepared horse, specifically the movement of his back during a walk, to provide therapeutic effects. This movement is alternating and repeats rhythmically and cyclically. It offers stimulation for all senses and this directly influences motor behavior of the client through the activation of all levels of central nervous system. Our main aim is to improve neurological functions and sensory processing in children with various health disorders."

One of the ideas I am starting to consider is about collaborating the efforts between the UK and EU therapists even further next year....

The farm where we are accessing treatment with Anel this year is the home of a child with complex needs like Sierra's. They have built a property that has a hydrotherapy pool, therapy rooms and stables with horses, all of which the family intend to offer for other children with disability.

One of my commitments is to empower families like mine to access a global approach to treatment. While some of what each country offers is excellent, I have found that a combination of the various approaches, at different times of Sierra's journey, has been most impactful. 

I see a possibility of supporting other families accessing treatment that is not available where they live. 

If we were to have the Czech physiotherapists working from the same place as the UK therapists for a couple of weeks next year, and encouraged families to access the therapy all together it would be easier. 

Something like: one week of Hippotherapy in the morning, physiotherapy in the afternoon and a couple of hydrotherapy sessions. I think it would be great for the parents as well!

Food for thought!


Monday, September 21, 2015

Helping Hands trip...

We made it to Rome, and my shoulder is still intact. I was so concerned leading up to this trip about how I would manage two weeks of lifting Sierra and her equipment, several times a day, for two weeks. I've had an injured shoulder for weeks which hasn't been recovered due to lifting Sierra at home, so being away with her, full time for two weeks has been worrying. 

I had to ask for the airline attendants to help with the lifts from her wheel chair, to the aisle chair that takes her through the plane, onto the plane seat, then back onto another aisle chair to exit the plane, then onto her wheel chair and so bags! 

Thankfully Tereza, Sierra's physio for this week has arrived now arrived from Prague. Yesterday we took what became an epic journey from Rome to Tuscany via Pergia! Talk about annoying. There were no hire cars in Rome, NONE. We had to take a train to Perugia, then a taxi to Perugiua airport and then drive to Tuscany! 

Luckily Tereza is comfortable driving on the right hand side, and was able to help with all the lifts and transfers from one vehicle to another, which included Sierra, her wheel chair, car seat and many bags.

Friday, September 18, 2015

Helping Hands trip...

This time I'll tell you the truth. No embellishment for the sake of protecting people. 
I have been really worried about this trip. I have a very sore shoulder. How on earth can I do two weeks with an 8 year old disabled child who I can't even lift!
Anyway, we're on our way. The most important first hurdle has been overcome. I was able to hold her long enough over the toilet such that she could do a number 2. My sore shoulder killing and my thighs screaming at me, but I was able to hold her upper body upright enough to allow her body to do it's function. 
Most people wouldn't even want to know.. The medicine can only be given after a number 2. 

Saturday, September 12, 2015

A week to go 'Helping Hands'....

It's less than a week until we leave and we are so far from having the finance we need.

What we're focussed on this time is getting Sierra's hands functional so she can drive a motorised wheel chair. I am taking Sierra over to the UK see Anel van dee Merwe (see previous blog posts about the therapy itself)

I've managed to negotiate a good price on everything so far: accommodation walking distance from both the venues where Sierra will be accessing physiotherapy, flights, the physiotherapy itself and venues to bring everyone together to celebrate Sierra's Angels, but the cost is still significant. 

I'm always so anxious at this point that it will be a waste of time, the money won't come or that I will forget to organise something important. It's a big trip with so many details to finalise. 

Every time I have been O/S in this way it has proven to be far more impactful than I imagine BUT I still go through the same thought processes....

Thanks all for your support! A quick reminder of the link if you are willing to give a 'Helping Hand' at this time. 

Ps. Remember to post your 'angel wings' hands to BOTH your Facebook page and Sierra's Angels 

Every $ amount makes a difference.

Love Karen, Shane and Sierra x