Each time I take Lily to see the ENT doctor, I have one more child with Down syndrome with me - the first visit was just her, last time I also had Isaac and today Noah is home from school with a croaky throat, so I had all three of them - he probably wonders how many more children with DS I have!
As we suspected, the steroids have not made any difference to her hearing so we tail them off now. He''s given us some information on hearing aids and will see us back in the public system as she needs a CT scan of her ears (which would cost $1000 privately). She has about a 40 decibel or 40% hearing loss over all frequencies.
We dropped Lily off at school and Now Noah and I have just made a Devil's Food cake as its Paul's birthday today. Noah pulled all the wires out of the computer and playstation yesterday so is not allowed to watch any screens today (TV, DVDs computer Buzz game on playstation) - this is a major punishment for me too - what am I supposed to do with him all day as he's off school? At the moment he's unloading the dishwasher, but I'm not sure how long the helpfulness will last. I think he hopes I'll give way on TV - he already tried to persuade me that Isaac's favourite DVD is the Gruffalo!
We have Noah's IEP this afternoon - we'll be going against the flow of traffic when we take him into school for 3pm. I hope we can all concentrate with Isaac, Noah and J playing around us.
Then Joe, Abi, Sam and Anika are coming for tea and we're getting a Indian takeaway so I don;t have to cook after the IEP.
Tomorrow Lily and I are off to Christchurch for two nights to an NZDSA meeting about transitioning from school to work. We have to dress as one of the stages of our life for the Saturday night meal. I've printed out a sign that I'll pin on me that says "Who are all these children and why are they calling me mum?" that about sums up the last 25 year stage of my life!
Love Does Not Delight in Evil, but....
3 days ago