MRI Scan

Today is B's MRI scan. This is one of the scariest days of my life. We go to the big children's hospital instead of our local hospital and head for the Neuroradiology department. B's isn't allowed any food, only water in the morning and that's it. He is going under general anaesthetic and I'm terrified. When they put him under he goes all floppy and looks more asleep then when he's asleep (he normally fidgets in his sleep). He looks dead to me and I burst into tears. I know he will be fine but I don't like seeing him like that. I'm so glad B's daddy is with me for comfort. I would never have got through this appointment on my own. We have to wait patiently whilst they take our sleeping prince off for the scan. It doesn't take too long but when they bring him back to ward he is still asleep and has difficulty waking up. It's such a relief when he does wake up and gets back to his normal cheeky self. Now we have to wait again for the results of the scan.

Orthotics

We are at Orthotics today to collect B's crash helmet and new boots!. Yay

This is probably one of my favourite photos ever! Taken at Legoland. You can see both his helmet and his boots.

Orthotics

B has been referred by physio to Orthotics. He has an appointment today to be fitted for a crash helmet and special boots.

We choose black ones because they look like cool Dr Martins.

Blood tests

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.

Occupational therapy referral

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.

Paediatrics

We're back in the paediatric today for a review of B's motor progress. He is just over 2 years old now. Pulling himself up to stand and cruising around furniture. He takes some steps when held by both hands but his gait is asymmetrical with a slight dragging of his left leg.

He has marked hyper-mobility and his reflexes remain exaggerated. Muscle tone is slightly low but  this might be related to his hyper-mobility.

I've been researching cerebral palsy and ask the paediatrician about this. She decides to organise an MRI brain scan and do creatinine kinase enzyme levels. Physiotherapy to continue and a review of B once the results of the tests have been received.

Hearing test take two

B has another hearing test today because they had trouble testing him the first time. In the Audiology Clinic they put him in a box like the TARDIS but it's not bigger on the inside. It's sound proofed inside. I had no concerns about his hearing but he is still not saying any words. He vocalises sounds when interacting. He passed the distraction test today with better and faster responses then his first test in December 2009. Consultant Community Paediatrician in Audiology says B's hearing appears to be adequate for his speech to progress further and he is discharged from the Audiology Clinic.