| With Jessica, she has very weak muscles, ligaments, and connective tissue. This means she needs orthotics in her shoes to help support her ankles. She had her toes strapped to prevent them crossing over each other. Although she can walk, she is very unstable and can not walk great distances or run very well. The strength in her hands and arms is very weak and she wore splints on both hands until she was 7y. Jessica's Aortic Root - In her heart - was operated on in April 2001. The operation was a great success. The surgeon, Dr Graham Nunn, was able to save her aortic-valve. Apart from some minor complications after the surgery (ie. during recovery), Jessica did really well. Unfortunately Jessica's sternum did not heal and she had to have surgery to repair it in June 2001. They will still have to closely watch the heart with echos avery 6-8 months for some years. There is a mild Mitral-Valve prolapse, though this is not causing any issues at present. Jessica still sees the eye-specialist every 12 months, and had minor day surgery in July 2002 to correct her lazy-eye. Our main concerns with her at present are that she suffers very low oxygen saturation, anaphalaxis to egg & nut allergy, chronic asthma and eczema. On the 20th December 2002, Jessica had a biopsy done on her small intestine, to check for Coeliacs disease. On Monday 30th December 2002 the Doctor rang us to tell us that Jessica has indeed tested positive for Coeliacs. As of December 2006 Jessica weighs only 25kls, is now 142cm tall. She lives on a very strict gluten-free diet, free of eggs and nuts also. Although her BMI is under 13, she is quite healthy and eats like a horse. Great thanks to Dr Anne Turner and Dr Lesley Ades (Both Geneticists) who have helped in the organising of Jessica's many specialists. |
