Tuesday, 25 May 2010
Bastian has to have loads of blood tests. They are looking for haemoglobin and full blood count. Thyroid function, urea and electrolytes, serum creatine kinase, plasma amino acids, chromosome analysis and search for Fragile X. Also urine tests for amino acids and organic acids. Getting urine off B is a real challenge. He absolutely does not pee on demand. I have to stick this bag thingy over his credentials and put a nappy on. Most of the time they leak and you have to do it again. So annoying. And then you have to squeeze the wee out of the bag and into a tiny pot.
Monday, 24 May 2010
I've got a letter today from children's occupational therapy service. B's Physiotherapist has referred him to OT about his difficulties with developmental delay. They offer an initial assessment and intervention in the form of therapy sessions and home or school therapy programmes. There is a high demand for this service and there is a long waiting list (bla bla bla- where have I heard this before!) They aim to offer an appointment within 18 weeks. I've got to fill out a questionnaire and send it back.