The staff recognised that I was becoming extremely anxious and wasn’t coping as well as I could. Brian House don’t just care for children, they look after their parents too.
When I was four months pregnant we were informed that Jensen had a heart defect but it wasn’t until he was born that the medical professionals were aware how complex his needs would be – at just a couple of weeks old he had to undergo open heart surgery at Alder Hey Children’s Hospital.
Jensen has a condition known as Global Delay Development , we have just recently been told that this was caused by a genetic default which also caused his heart defect. Jensen is small for his age, although he is three and half years old he wears clothes for toddlers aged 12-18 months old, he only learnt to walk two weeks before his third birthday and he doesn’t talk yet.
Jensen had to have open heart surgery again this year and hopefully now his heart is fixed for good.
As a baby every time he had milk he used to be sick and have reflux which meant he wasn’t putting on weight and growing. We’d have weeks where he would scream constantly because of the pain he was in. I wasn’t getting any sleep at all. Due to Jensen’s reflux being so bad and Jensen being tube fed we were advised that nursery wouldn’t be suitable for him and meet his specific needs so I spoke with my health visitor and this is when she mentioned Brian House.
Jensen’s consultant referred us. I didn’t know what to expect and because he’d been so poorly I was nervous about leaving him but I didn’t feel I had much of a choice – I was exhausted.
At 7 months old Jensen started to attend Brian House and he’s been attending Brian House for 2 years now; during the day every Thursday and overnight once or twice a month. Jensen enjoys coming to Brian House, he really enjoys the one-to-one attention he receives from the staff. Jensen loves the multi-sensory room and is stimulated by the lights and visual effects.
Jensen doesn’t eat food, he is orally hyper sensitive and every night from 9pm from 7am is fed high calorie milk through a tube directly into his stomach and intestine. No other member of my family feel confident enough to look after Jensen overnight . I am his sole carer – Brian House staff are the only other people I can leave Jensen with.
Brian House is an absolute godsend! When he attends on a Thursday I go to work – which I thoroughly enjoy, I benefit from the interaction with other adults. When he stays for overnight respite it gives my husband and I the opportunity to go out for a meal and enables me to get a good night’s sleep.
Caring for a child with complex needs like Jensen isn’t easy. The staff recognised that I was becoming extremely anxious and wasn’t coping as well as I could and referred me to the Linden Centre for counselling and to have a course of reflexology. Brian House don’t just care for children, they look after their parents too.
The thought of taking Jensen away from home with all his equipment, his unpredictable behaviour and change of routine for him is nerve wracking. His dad and I got married in September last year and in June we are hoping to go away on a belated honeymoon – this will only be possible because of Brian House’s support.