I’m just on my way down to pick Aideen up from the Special Care Unit which she attends Monday to Friday from 9 till about half 2. And Aideen’s Special Care Unit, this week are having their fun week so I decided to dress up as Captain American to try and fit in with them all down there.
Aideen is 12 now and when she was born we never got a diagnosis of what was wrong with her. They just noticed something was wrong when she was three hours old that she wasn’t feeding. She wasn’t able to suck the soother so she went to, she stayed in ICU [Intensive Care Unit] for two weeks and then she was sent off to Temple Street [Hospital] for further tests and eventually after about a month we were sent home with no diagnosis.
Only recently there in the last year or two they did a study over in the UK on Aideen in a college and they came back after two and a half years to say that she had a condition called DNN1 which they say there’s only about four or five documented cases in Ireland. They tried to explain it that it was a gene deletion that caused what is wrong with Aideen and if it was any other gene that was deleted it wouldn’t make any difference to her. Aideen attends the HSE it’s called the Special Care Unit which is here in Navan.
They have teachers in the Special Care Unit that Aideen would attend maybe for half an hour a day depending on how she is. If she was sleepy or that the nurses would keep her in the room or if she’s awake and alert they would send her down for half an hour to the teachers to do some sensory work, painting, stuff like that with her.
We heard about LauraLynn [Children’s Hospice] because when Aideen was about two years old, one of the nurses from the HSE told us about LauraLynn. It was only open about six months so we had an interview with them with Aideen and they showed us around. And we were fairly impressed with what we saw. We were worried about sending Aideen away, somewhere that we didn’t know but LauraLynn has always been like a home from home now for Aideen.
We feel safe and confident with the care she gets while she’s there, we don’t have to worry about it. They try and make it as fun as possible and they would have camps and that for the siblings so the siblings can get away from the idea of a hospice for a while and spend time together with families and they just help you out as much as they can really and if you ever have a problem you can ring them.
Aideen would go into LauraLynn for a two to three day break at a time when we send her in. And we wouldn’t leave Aideen if we weren’t happy with the care that she was getting in LauraLynn.
I would definitely recommend the hospice because a lot of people would be out there doing it all on their own and not realise that the help is out there for them. And I know you might feel guilty. Like sometimes at the start I used to feel guilty with Aideen going into the hospice but I could see she enjoyed her time there, and it was probably one of the better decisions that we ever made that we’d send her to the hospice.