I just wanted you all to know that Adam's beautiful quilt arrived today. We are all quite emotional and Adam adores it. He lay on it, wrapped himself up in it and insisted on lying in his bed and being wrapped up despite it being only mid-afternoon!
I told him that we would take it to hospital with him whenever he had to go and that everyone would know it was his because it has his name on it and he was suddenly very keen to go to "hostiple"!
We have told him about all the lovely ladies who made it just for him and I think he feels pretty special. Thank you all. Thank you all, so very much. x
Adam was born with severe bilateral talipes (clubfeet), bilateral hip dysplasia and had his arms and legs locked into awkward positions. He could only really move his head. He was completely beautiful and worryingly content.
Treatment began at just 3 days old when Adam was put into a Pavlik harness to try to correct his hips. At one week he also had his first treatment for talipes where his feet were stretched out and full leg casts applied, as well as wearing the Pavlik harness. The harness worked for one hip but the other required surgery when he was 13months. After surgery he was in a hip spica cast from his chest to toes which he was in for 4 months.
His feet have had several small surgeries to try to correct them but he is still going to need further surgery. In all, Adam has spent over a year with plaster on anything from one limb to virtually his entire body.
At 6 months old he was very poorly and at long last people accepted that his not moving was worrying. He has undergone many tests, including lumbar puncture, several MRI scans, and having electric shocks put into his muscles to find out whether the messages were going through to his brain. Adam is the sweetest child and always says "thank you" no matter how upsetting the procedure has been.
Adam suffers frequent chest infections and is often unable to go to school. In the first 6 months of last year Adam had 8 chest infections, each of which lasted between 2-3 weeks. He is often hospitalised and has ended up in HDU.
Adam is unable to sit unaided, nor can he stand or walk. He can use a manual wheelchair and has a powered chair which he is becoming much better at using. It is giving him much greater independence to explore the world.
Eating and weight gain are major difficulties for Adam. He struggles with chewing and chokes on a lot of things. He does not seem to get hungry and only really enjoys calorie free food. We have worked hard to keep him eating orally and will continue for as long as he can.
Adam is in year 1 at mainstream school, where he gets a lot of support. He is a very happy and easy going child but is not physically able to cope with full time school. It has been agreed with the education authority that he shall only attend 3 and a half days per week, although ill health and appointments reduce that most weeks. He is educated at home more often than at school at the moment.
In January 2010 he suffered an injury at school which has left him with a dislocated hip. He was too poorly to have it corrected last year but is due to have the operation in April. Unfortunately, his scoliosis has worsened significantly over the last year and he will now be listed for spinal surgery as soon as he has recovered from his hip surgery. Growing rods will be put into his back. Our local hospital cannot treat Adam so he will have to travel to a hospital 200 miles away for his surgeries, being away from his older brother whom he adores.
Adam is now 5 years old.