Happy new year
Happy new year to all of you. December went past in the blink of an eye. It has just occurred to me that I haven’t posted anything in ages. As we now have an Instagram account (@archangelmldtrust) it’s easy to forget to post on the blog when you are regularly posting pictures. Sorry for those of you who don’t follow Instagram. We had a super Christmas in the country and it was lovely spending time with our family. Santa was very good to the girls, bringing an ‘Air Track’ professional gymnastics mat for Angelina and a ‘swung’ (the other person swings you) for Ava. The weather was so mild we had butterflies indoors! Before Christmas we had a high level meeting with the NHS highlighting the lack of support we receive for Ava, especially in school. They have since assigned us a community Physiotherapist and Occupational Therapist who are responsible for ensuring that Ava’s needs are met during the school day. This is fantastic progress. At last. They aim to get Ava on her feet again and will provide the school with equipment such a standing frame and more suitable walking frame. They also intend to train Ava’s 1:1 assistant to do simple exercises and stretches throughout the school day, which should give her the movement she desperately requires and help counter her stiffness. I’m also pleased to report that we had a positive visit to a spinal surgeon at Great Ormond Street. He had been worried about Ava developing scoliosis, due to her lack of walking and incorrect seating posture, however her latest x-ray showed some improvement, so we are on the right track with better seating and her new wheelchair. Next week we are meeting with the NHS again to discuss some exercise equipment for home that might further aid in the recovery of Ava’s walking. It would be nice to think that Ava will finally get the support that she needs and is entitled to.