fordfiesta, only just seen your post!!!
I'm doing ok I guess, we all put on this "oh well, it could be worse, I'm coping just fine" fake smiley face, but inside we are thinking - What's worse than not being able to touch our babies delicate skin, to hold them properly, cuddle them, tickle those chubby little thighs and make them squirm with laughter and delight, watch them progress from sitting, crawling, walking and running, like all their friends of similar ages, watching them watching others running around, climbing up slides, jumping in ball pits, sitting in ride-on toys, playing on rocking horses and seesaws and having a turn in the swing. The other issue is not being able to potty train her as she cannot sit on a potty due to the position of her legs. DD was using a potty before all this started.
This is harder to deal with than many people can understand, seeing the frustration on the faces of our babies, experiencing the horrible way these spicas restrict our children, but at the same time knowing, it's there to make them better.
I didn't anticipate feeling so low about this, after loosing a precious child to cancer, I nievely though this would be easy. Although it is on one hand, a world away from where I was with DS1, on the other hand some of the fears and frustrations - particularly the unknown outcomes and implications are the same.
DS1 too had problems with his legs, his was registered disabled, his bones were riddled with disease, so I have already experianced caring for a disabled child and although it was a far different cause of his disability, it does not take away the significance of DD's disabilities or make them easier to deal with.
All in all, I am ok, just have some bad days when it all gets to me. When I think DD has been in cast for 10 weeks now and has at least another 12 weeks to go, through the summer, in the warm weather, it is hard to look on the bright side. Even more so because we don't know if this will work, because of the extent of her hypermobility, the first 7 weeks in cast did nothing, her hips were loose inside the cast, the consultant cannot say if she'll be able to stabilise DD's hips and if she can, she still doesn't know if DD will walk, as it's the Hypermobility thats stopped her from doing that, not her DDH. She has made it clear that this will be a long and difficult process, she may very well need further surgery later this year, which means more time in casts and she's actually suggested DD may be in cast for all of this year! After her hips are sorted, she may need surgery, or whatever they do for the Hypermobility.
DD copes well, she drags herself along the floor, she does one handed press ups - very impressive!!! She pulls herself up but due to the Hypermobility, her feet rotate by 180 degrees and look like they are on backwards - it really makes us feel sick! There is just no way she can stand, even before the cast she couldn't support her own weight, her legs just popped, cracked, crunched and folded beneath her. Still, she remains a very happy, bright, funny, cheeky little ray of sunshine.