Holidays

It's half term and we are so ready for some stop time. We found out Naomi had mock SATs year 8 on her return to school after her surgery. With support from a fantastic OT and Naomi's SENCO we have been able to get support for ; Naomi's seating , breaks in exams so she can move around and change positions, she is starting to use a keyboard to type her longer pieces of work and will start touch typing at school with a small group of children , who also need to use a keyboard. In this day and age, where no one hand writes long pieces of work , moving over to typing will be far less effort for Naomi's hyper mobile hands . She had a wrist support fitted last week to see if that helps reduce the pain in her wrist while writing. We now have special cushions for her at school and home to reduce pressures on her sitting bones. With a BMI of 11 she needs lots of padding. We are getting a pressure relieving mattress delivered this week and a raised loo seat. Her annual eye test on friday showed no changes to the lens dislocation and eye sight is good. We will have the annual heart check next month, the enlarged aorta has been stable for 3 years now and Naomi takes beta blockers and losartan daily to help control aortic dilation by reducing her BP.
Naomi is now in Long Tall Sally trousers for school ( thanks Jenny for altering them so quickly) . We went for the 38" inside leg to get some growth out of them! So time to rest and recharge all our batteries. Sadly Rachel's mother died on January 8 th from a stroke. We had had a year with her with no speech after a stroke in 2011. Many treasured memories from last year with Grandma and Grandad celebrating their Golden Wedding. We miss her lots.