Hi :-) Leah here (Sienna's mum) Sienna is now 19 months old and she has been trying to wear her boots and cuffs but they aren't working as we had expected :-( we did manage to find a pair of shoes that she will keep on and that are helping her to stand flat footed and she is now starting to walk along furniture or behind her walker, so it is progress!
Sienna also had a check up with her surgeons this Monday just gone (6th July 2015) and due to her test results, and the fact she is having balance issues and falling over if she stands up or even falling when she is crawling, or misjudging objects to climb up onto, they plan to operate again as soon as they can get theatre space, and organise her surgical and paediatric anaesthesia team, some time in the next ten weeks, so now we just have to wait for the phone call to confirm dates. She is currently on some pretty heavy pain medication (which isn't subsidised) to help her through until her next operation is complete. We are currently selling soaps and bath bombs to try and raise enough money to cover the cost of her meds and also her next operation (travel/accommodation etc)
Sienna is doing really well with her Makaton (sign language) and her cognitive/mental development and fine motor skills are at or above where they should be :-) she still only says a few words, mum, bath, up, yeah, nah and no more, but will sign for things she wants or needs #clevergirl
Sienna is still only eating mashed food, and relies heavily on formula but I am very pleased to announce she has FOUR teeth! (Almost miraculous for girls with OFDS1) and it appears she has a set of molars on the move too! #happydays
I will update more once she has had her next operation and let you all know how she is getting on. Thank you to all have donated so far, it is really very much appreciated. We still have a long way to go but Sienna takes it all in her stride with a smile on her face.
Love to all her supporters and followers <3
