This weeks special needsy stuff

To start with I've already realised I missed suction cathetas and suction machine off my last post's list! Arggh.

So nates been snotty. Making funny noises, again, and just generally worrying the pants off me, again. Up to the hospital we went. Notes weren't avaiable so I had to take the drs through the whole story of Nate. Again. He is described as having "complex needs" and his story in long and complicated. It is frustrating having to relate things over and over again but it's an awful lot of pressure on me not to forget something vitally important. I wish they kept a database of the "basics" on their computer system- just tests done, professionals involved, that sort of thing. I have come to the conclusion that I need to summarise his history, keep it updated, and have a copy at all times. Is this over the top? I'm not sure but that's my plan.... When I get a chance! It was with great relief that when in hospital for a repeat urine test yesterday nates paediatrician spotted us and took over our care. She knows as much as we do about Nate. I explained my frustration and general annoyance at nates surgeon and she put my mind at rest about everything and apologised for his attitude and said that along with nates neurologist they were monitoring his head and had no concerns.

Equipment is a nightmare. You don't know what's available until to tell all and sundry how you can't manage, or even better- something isn't safe. But still you end up waiting months and months. We have a meeting with some reps and our OT and physio in a few weeks. They are really trying to help but nothing can be sorted quickly. We are desperate for a car seat and supportive pushchair. Fingers crossed they have something suitable. My worry is that this pushchair thing won't fit in my boot :( so I doubt it will be helpful at all. And In addition I know it will be very special needsy with head support and padding. I know my child is different but these things bring even greater attention to the differences. I know this is
something I need to get used to but I won't pretend it's easy. We get the staring already.