In the UK Lilian has over twenty different medical teams dealing with her various issues. Some we see yearly (heart and growth), some quarterly (oncology and brain) but most are monthly and some are even weekly. It's hard work. Really hard work. It doesn't leave much time for the important stuff like enjoying family life. Working hours in the UK can be long and with the daily commute thrown in time to spend with family is often short lived. Mette and I also have to perform Lilian's therapies at home. Lilian's two main issues are her extreme lack of muscle strength (she is almost completely immobile and cannot walk) plus her lack of ability to feed (hence the tummy tube). Mette and I have to perform daily therapies to help this. Such as physio exercises and stretching. We also have to feed her via the tube and "train" her how to eat herself. This takes a few hours a day. It is extremely tiring and can be very upsetting for both Lilian and us. To help with the burden we have also funded private care for feeding, physio, occupational therapy and speech and language therapy. All this effort works okay but it's extremely hard work, doesn't leave much time for fun stuff and it disrupts our family life too much.
In Denmark most of these therapies would be catered for at Lilian's nursery. More than six hours a day five days a week. Their principle goal is to for the nursery to take the burden of the therapies away from the parents leaving us time to enjoy having a family life. It's an amazing attitude towards care and is such an amazing opportunity for our family we'd be stupid to turn it down. Being based in the picturesque town of Vejle which just so happens to be where Mette's family live is too good to be true.
|The view from the rear of the rented flat in Vejle.|