The Waiting Game

We’ve been in our new home for six months now and it has been a lovely time. Have we completely unpacked? Heavens no! Do we feel at home? Absolutely. Now we just need to wait patiently for the adaptations for Runa to start.

Now Ru has passed a specific weight marker, it is pertinent that she have appropriate equipment to keep her (and us) safe whilst being lifted, moved, changed and so on. She has been measured for a sling which will go into a hoist; that hoist will be used to move her from her bed to her chair, from her chair to her other chair, and eventually from her chair to a shower seat. We are patiently waiting for a hoist to become available to us.

Runa’s bed is becoming less appropriate now that she’s older. Years ago we bought her a low down bed so that if she rolls out of it (which she does regularly) she’s close enough to the floor to be safe. But now that she’s getting too big for us to safely lift her from the floor, it’s time she gets a bed that will keep her safe whilst not snapping our weary spines.
Runa needs a “community bed” with barriers and has been approved for this by a complex needs nurse. We are now waiting patiently for a bed to become available to us.

Ru is too heavy to be safely lifted up and down stairs and in and out of the bath, so a wetroom will be designed and created using space in our garage. The big drive for us moving house six months ago was to ensure we had adequate downstairs space so that Runa can have complete ground floor living… We are patiently waiting for the architect to come round and get that ball rolling.

Runa is too big for her adapted pram and has been fitted for a new “big girl” wheel chair. The frame will be pale blue, the wheels with have planets on them, it’ll be very pretty and cool and sophisticated… And we’re patiently waiting for that.

As I have said many times, we are exceptionally lucky to live in a country that facilitates adaptive equipment and living without the need to fight with insurance companies. But the waiting game is a bit tedious. However, we will continue to wait (and occasionally kick up a fuss), because there’s nothing else for it. We need to balance our expections of time frames with our sanity, because this scenario is going to repeat itself continuously for the rest of our lives.

Other than being a gargantuan lump who refuses to stop growing, Runa is doing really quite well.

She still loves nursery and is thriving there. She loves it so much that when the buzzer goes off to announce parents arriving she starts crying. Because she doesn’t want to leave. Which is lovely, but also like an arrow to the heart!

Runa is now in her preschool year. Needless to say I’m a bit emotional! It won’t be long until she attends the local special education school. The school has a hydrotherapy pool, two Sensory rooms and a trampoline room. How awesome does that sound?

In other news with Runa, she’s seems to understand the instruction “up” when we want her to weight bear and she has also become more grabby with her left hand. She is happy, snuggly, beautiful and endlessly inspiring.

hopefully before the next blog post some of our waiting list will have been ticked off. I’d love to send an update with photos of Runa’s beautiful new wheelchair, a helpful new hoist, a cozy new bed and a kick ass new wet room. But hey! If not: Runa is worth every moment we have to wait.