Each fortnight, our Playtime Playgroup is a source of joy for children with life-limiting or complex conditions and their parents who use it as an opportunity to bond with others on similar journeys.
One of these children is the gorgeous Ivy who turns five this October. Ivy lives at home with her Mum Kristy, Dad Antony, and older brother Leroy. Ivy has been diagnosed with Hypoxic Ischaemic Encephalopathy (a brain injury caused by oxygen deprivation), Spastic Quadriplegic Cerebral Palsy, Epilepsy, and Cortical Vision Impairment. She is currently under palliative care at Perth Children’s Hospital (PCH).
Kristy works part-time and Antony works FIFO, meaning he can be away for weeks at a time, leaving Kristy as the sole carer for their two children. The labour of love that comes with caring for a child with complex needs can be exhausting and isolating for parents.
Ivy’s Care Needs
Due to Ivy’s diagnosis, she is fully dependant on others for all movement and transfers as she has very limited purposeful movement and tone. She has no head control which makes airway management difficult. Ivy gets sore muscles, this means she is in some degree of pain every day and is dependent on others to recognise this and respond. Her seizures are unpredictable and can be unnoticed if you don’t know her well. Her vision impairment is caused by neurological issues and those interacting with her need specialist knowledge of how to manage this.
Ivy communicates non-verbally, it’s important that she has people around her who understand how she communicates her needs. She is dependent on family and carers giving her medications three times a day and milk feeds given through a feeding tube in her stomach.
Ivy has a busy schedule, she receives hippotherapy weekly and speech therapy, occupational therapy and physiotherapy fortnightly. She needs stretches that are required to be completed daily by family, support workers, or school staff to allow safe movement and alleviate pain. Even with all these many appointments, Ivy’s family always makes time to attend Playtime Playgroup.
Getting Ivy to Playgroup
Just leaving the house is a mammoth task. To get to Playtime Playgroup, Kristy must get both her children ready to leave the house in the morning. Leroy needs to get ready for school and Ivy is fully dependant on being washed, dressed, and fed. Both children also need their bags packed for the day, Ivy needs her milk, plus all the equipment needed for giving it via her feeding tube, her medications need to be measured and stored correctly, and emergency medications need to be at the ready for seizures. Once Ivy’s chair is folded down and put into the car with her safely strapped into her supporting seating, they then drop Leroy off at school before heading out to Playtime Playgroup.
What Playgroup means to Ivy
Since we’ve launched, Ivy has attended almost every Playtime Playgroup session at Hannah’s House. Her mum Kristy has defended bringing Ivy out to Playtime Playgroup when the family has had a busy schedule, as she does not want Ivy to miss on something that she really loves.
Here’s what Ivy’s mum Kristy had to say about what Playtime Playgroup means to her family:
“Ivy and I love going to playgroup. It is pretty much our favourite thing to do. We reschedule appointments so we can always go. Ivy gets to do fun, sensory things that beat going to therapy. It is about quality of life for us and being together and enjoying the time.
At playgroup we do all sorts of things from craft, nursery rhymes, storytelling, music, messy play. We also love going to different locations and making new friends for both Ivy and me. It is relaxed we can have a coffee, morning tea and a chat. We get to see old friends and make new friends.”
“Leroy also loves being able to attend Ivy’s playgroups when they have special outings. He gets to see that Ivy is able to do fun things too and can meet her friends. Favourite outings have been Lollipops Indoor Play Centre, Scitech and Museum WA. It has shown him that Ivy’s life is not all therapy and hospital visits.”
“Attending playgroup is purely for our enjoyment and stimulation.”
It’s incredible to see the direct impact our Playtime Playgroup has on our families’ lives As part of our vision to provide, care, comfort and joy for every child with life-limiting or complex conditions and their family, even those who aren’t receiving support services from us are still welcome to join us for Playtime Playgroup and our events.
Find out how you can support our Playtime Program here.