Over ruled
One of the battles we have with Rory is about whether it is ok for him to do things. As a ‘normal’ independent young adult he would be making decisions for himself. However, due to his impairments Sean or I often make decisions for him. This is a source of frustration and he frequently responds with “you tell me to make the most out of life but you won’t let me do things”, or “you want me to be a young man but you treat me like a child”. The problem is Rory has no idea about safety, the level of effort required by others to help him participate and the consequences (for himself, Sean and I) if things go wrong. Todays argument was about whether he should ride on the Next Level Fitness float in the Inglewood Christmas parade. For half an hour he argued with me about why he should be able to do this and I explained why I said no. About an hour later I received a call from Sean and Dane, his Personal Trainer, to bring Rory down to the gym as they had made a safe spot for him on the float. Yesterday Rory and Colt rode in the Christmas Parade on a damp Inglewood day and had a great time. Thank you to Dane for going out of his way to include Rory and over-ruling me!
Sean and Rory made a trip to Hamilton this week so Rory could visit Waikato Hospital for a Glucagon Test. This will tell us how well his pituitary gland is working. He had to fast for over five hours while the nurses made numerous blood draws from an IV line in his arm. The test is a precursor to starting Rory on an adult maintenance dose of growth hormone. Even after we stop growing adults still need growth hormone. It plays a role in healthy muscle, how our bodies collect fat, our cholesterol levels and bone density. In addition, growth hormone is needed for normal brain function. We expect Rory to be deficient.
We have had the builder and plumber from ACC in the house this week making the bathroom safe for Rory. Who every knew it would be such a big job to put safety rails in the bath/shower. The bathroom is the highest risk area in the house for Rory as he has had several falls and near misses. It is hard for him to manoeuvre in a small space, is slippery and he has to take his cochlear implants off to wash so is deaf.
On Friday evening we attended the Christmas party for the Taranaki branch of the Child Cancer Foundation. Even though it was a wet evening we enjoyed dinner and catching up with the other families. It has been two years since we have been able to do so.
Today Sean, Colt and I slipped away to walk the track to Rerekapa Falls in North Taranaki. Highlights were the deep mud puddles, the waterfall, the multitude of native orchids and hearing the chorus of Toutouwai North Island Robin. Rory spent the day with the lovely Jo and they visited the Manutahi Taxidermy museum and had lunch at Lepperton café.
Happy 51st Birthday Sean. You have packed plenty in this year. May next year be as great xox