Diary #2 All talk, no action

Friday, 4 November 2016

Well as the title states, I'm feeling a bit frustrated with people being all talk, no action. As I stated in my last diary post; our physiotherapist is on it. However the people around her aren't so on it.
Many of her referrals recently have left us feeling mixed emotions.

Early in the week we had a very exciting appointment to go and try out a standing frame. Teddy doesn't attempt to hold himself in any way, he doesn't have any head control and has little to no core body strength, so standing is never going to be possible without an aid. So Tuesday was coming, I had been counting down the days with feverish excitement and then... Teddy was ill. Story of our bloody lives. Just as I feel we are getting somewhere either the flu or a chest infection hits and everything has to be put on the back burner. But not this time Teddy, Mummy was determined. I kept pushing him to get better, regular nebs, regular chest physio, increased oxygen and just pure will!

On the day, his carer arrived and she was just as excited as I was about the possibilities the day brought and together we decided that although Teddy wasn't 100% we didn't want to miss this appointment and have to wait god knows how long for the next one. So we scooped him up, shoved him in the car and set off. All the way we were both so nervous, concerned about how ill and grumpy he was and the fact that in this kind of mood we usually get nothing out of him. When we arrived, we were late but it worked out well, we were rushed straight through into the room where the frame was all set up. Teddy protested, as we had anticipated, and it took both the physio and the standing frame lady, a rather long time to get both Teddy and the frame right.

Shock horror, he bloody LOVED it. Every one was so shocked at how happy he was in his frame. His position was fantastic, he looked amazing and I was just so proud. As soon as he was up, he began independently moving his head, something we had been told the frame would help with but not this fast. I was so emotional, as the physio pushed him towards me I was just so overcome. This was his first steps to me, the first tine he had been able to travel towards me without me having to go to him. OK, I know he wasn't actually walking and I know someone was pushing him but they were doing what he wanted them to, I could see it in his eyes, he wanted to travel towards me and he could.

After all this excitement, the woman who organised the frame was extremely happy with how he had coped and vehemently said we could have it! Aaahh how exciting, the amount of progress he had made in minutes, imagine what he could do if he got to go in this every day? Ahh I can show Mike, he can have the moment I just had with our son. All she had to do was let their driver know, he would ring us and then drop it off. It wouldn't be today but definitely the next few days.

So here we are, nearly two weeks later, still no frame. "Why not ring the people?" I hear you ask, well I have done, I rang the physio, she rang the woman- nothing! They can't get hold of her for some reason. When they can, they will ring me. Still no phone call. I know we have been so lucky getting the opportunity, but don't dangle the carrot. We are either doing it, or we are not. How is it fair to hinder his progress by pissing about?

Hopefully, this time next week I will have much better news! And also the potential for another piece of equipment.

But for now, we keep trooping
x