Non Stop-tober Part 1. – October 2014

Non stop-tober part 1

October was yet again another busy month. Last year I wrote a post about October being, must be an October thing.

The 1st of October was World Cerebral Palsy Awareness Day.
After such a good response to National Cerebral palsy day in March I wanted to again help in some way raise more awareness.
So myself and a fellow Facebook mum whose gorgeous little boy of Owen’s age also has Cerebral Palsy decided to set up a page dedicated to the day. We suggested everyone post “Selfies” of themselves wearing green, Changing profile pictures and posting on their walls anything green or awareness based. Basically we wanted to turn Facebook green for the day.
We had a fantastic response, It truly was overwhelming.
The page it self got near to 500 likes and we join up with other pages who were also doing green “selfies” to raise and share further awareness who then did the same for our page.  Thank you to everyone that got involved.

It got me thinking though about maybe in the future setting up or taking part in something bigger. I want to.somehow not only to raise awareness but to help changed the life’s of people who have Cerebral Palsy or any disabilities really. I have a few ideas, but they are taking time to get off the starting blocks. But maybe watch this space.

October for Owen was a fully booked month of appointments to contend with. First appointment of the month being a Physiotherapy appointment.
It was the first time I had ever brought a Physiotherapy appointment forward.  I was having major concerns that Owen’s tone had drastically increased. He seemed very stiff and at times unmovable. It also seemed that Owen was in a lot more pain. This was especially apparent while undergoing his daily stretches and exercises and it got to the point where putting on his boots was near impossible because of the position of his feet.
So Owen’s Physiotherapists and myself decided the time had come that Owen will have to wear leg splints. We got an appointment to be measured for them in January.
We also increased his Balcofen. This increase took a few weeks to adjust as we can only increase the dose bit by bit, till we got a dose that seem again to work at a appropriate level with no side effects

All wrapped up for October

On the same day as that Physiotherapy appointment and a little over an hour later, Owen had his second appointment of the month which was a hearing test. My mum met me at the centre to sit with Florence while I took Owen in. I knew it was not going to be a smooth ride, when as I was carrying Owen in from reception to the room as Owen’s name was called, one of the ladies who would carried out the test commented on how Owen was laying against me as I carried him in instead of him walking, by asking if he was asleep.
If that wasn’t enough when I reached the room I was met by a small Children’s size table and chairs with some games on all set up for Owen to sit down and play. As I sat down on a chair (adult size) with Owen on my lap supporting him fully. Alarm hit the two ladies eyes as it came apparent they had made a mistake and they have not read his notes. One of the two said they wanted to ask a few questions about Owen and his development, while she did the other candidly put the toys away. I managed to keep my cool and answer the questions matter of factly. Is it really bad of me to admit I did take some enjoyment from watching them squirm? I did my standard summary of Owen’s medical history.
I think they were lucky, I mean anyone else or even myself on a bad day could had completely lost it.. either with complete rage or with tears.
Being constantly reminded that your child does not follow the “normal” development of a child is hard and quite frankly something we could do with less of.

They did continue to go ahead with the test. With Owen on my lap facing them, they got a noisy  toy and set if off either side of his head. They wanted him to turn his head to the side which it was. I explained that Owen finds turning his head hard work especially while on my lap, but in his supportive chair at home he does turn his head to both sides to hear noises. I also told them that his facial expressions would change if he heard the noises, but as he was facing away from me I couldn’t help them out. Although I felt his body tense also a sign he heard the noise, They weren’t convinced and gave up. They said it was hard to do a test on someone who couldn’t sit independently. They did manage to get a positive reading on the test where they put earphone s in Owen’s ear. They said they will re-test again in 6 months and see what his development is like then. I did then snap that I don’t think I would come to that appointment as it may be a waste of time again if they were just going to do the same and even though I am forever hopeful,  maybe expecting Owen to be able to sit unaided in the next 6 months is maybe a hope to far? I came out of that appointment feeling sadden & frustrated. If I wasn’t in such a rush to go and do the school run I would of made a complaint then and there.

(Part 2 coming soon)

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