August used to be the month when everyone goes on holidays, including most of the professionals who support my young adults, but not any more. It would be very ungrateful to complain about having too many appointments when so many families are fighting so hard to get anything, but it can feel a bit overwhelming at times!
However the appointments are yielding results (and information as per yesterday’s post).
This week my disabled daughter attended a Night Positioning Clinic, which actually looks at all aspects of sleep, and finding a way to help her lie in bed that is both comfortable (so she can sleep) and therapeutic (so her body shape is maintained as far as possible, avoiding complications like scoliosis). A sleep system is anything that supports the body in bed. Ideally B would sleep on her back in her soft sleep system that she has had for a number of years, but that has not worked well for a long time. So this week she was given this giant soft loose ‘W’ cushion (a bit like a bean bag) to put under her legs and with that she’s managed to sleep on her back for 3 out of the past 4 nights. So hopefully this will be a breakthrough for her.
B is still using the one adult cloth nappy that I bought! I don’t think they’re as absorbent as a disposable nappy, but I’m using it almost every day, and hoping to buy more soon. I still need the disposables as well for now, and was a bit anxious when I heard that the health service was introducing a new supplier, especially when the new delivery didn’t arrive on the designated day, but they did arrive the next morning, and luckily I was in at the time.
If you’ve been following my daughter’s story over the past few years you may have noticed that many of the photos feature her in an adult sized buggy, rather than a wheelchair, even though I vowed after her 21st birthday to use the wheelchair as much as possible to reflect her age.
BUT the buggy is a system with all the accessories you would find on a child’s version. Wheelchairs are not designed for Irish weather, or adults who need portable trays, or carers who need a chair with lots of storage. I still much prefer the buggy, and it’s also needed in case the wheelchair ever breaks, which has happened in the past. So I was devastated when one of the essential cables snapped. And then I was told that the manufacturer was no longer supplying parts for this model (it’s more than ten years old) and none of the Dublin based disability equipment firms wanted to know.
No guesses where I got details of a company that might be able to help.. Yep Facebook yet again. For all its faults, it’s a lifeline for families like mine. So yesterday saw me trundling down the motorway to lovely Laois to visit LifeStyle Mobility. Everyone there was so nice and helpful, and the buggy was fixed while I waited.
It was a rush to get it all done and back to Dublin before B came home, but I enjoyed the road trip, and even stopped to take this photo. It was great to get out of the city and get another problem solved too 💙
Have a great week xx