Jay had a set back in October 2000 after a visit to a physio for an assessment, she became in a lot of pain in one of her hips; we couldn�t move her for a couple of days. I rang the back surgeon and he said for her to come and he would take an x ray to be on the safe side. Unfortunately one of her bolts in her hip had come lose and would have to be re-done. She couldn�t go back in to hospital until January 2001 because of a problem at the hospital. When she did go in they just opened her up at the bottom half of her spine and they replaced the old bolt with a larger one. The problem with that is because Jay is a slim girl she can feel the bolt and it can be uncomfortable. Jay was in hospital about 10 days, this should have been shorter but her wound wouldn�t stop draining and she had to go back into surgery to have it cleaned out. Anyway after all that she healed up again only to get a small bubble on one part of the scar, this turned out to be an infection in her metal work. She is on anti-biotics for 2 years to see if it clears up.
A new check-up they need to go for now is a once a year sleep study, they go into our local hospital for 1 night and are monitored. They monitor their blood gases, heart and during the next day have lung capacity tests and lung x-rays. We have only been once up to now but everything was fine.
Just after New Year 2002 Daryl started to complain about discomfort and pain in his hips and is saying he can click his hips. I didn�t think this sounded very healthy so we went to get it examined. He sent us down for an x-ray in fact 2 x-rays just to be sure.
But sure enough his bolts have come undone, just as Jays did except his on both sides of the hips. We are waiting to hear when he will be going into have them repaired. He has taken it in his stride I suppose he was expecting it.
Roy and I are fairly easy going and most things we can take in our stride, and just get on with whatever needs doing. �How do you cope� is a phrase I hear a lot, but it isn�t me who has the most to cope with, it�s the children who go through all the aches and pains and setbacks. It should be �how do they cope�. I would hate people to feel sympathy for me I don�t feel anything but proud, proud of my family.
