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.

Speech and language initial assessment

B was referred to speech and language in October 2009. He was on the waiting list for a long time and seen on 24 March 2010 (day before his 2nd birthday).

B was referred by his consultant paeditrician for assessment of his communication skills. The following results were recorded.

B can stand but is currently unable to walk unsupported. He is late achieving all his developmental milestones.

Hearing checked and passed. He appears to be hearing. Short attention span but consistent with global developmental delay.

Mimicked using a phone. Hugs a teddy and pretends to feed a doll. B understands familiar routines and situations. Has not yet made link between words and objects. I do Makaton with him but he does not copy.

B says "ga" when he puts a phone to his ear. But otherwise is very quiet.

No concerns regarding his use of language and communication skills.

B's pre-language skills are developing in expected order but are delayed. He needs to be taught everything specifically as he has not learned to generalise.

Encourage pretend play. B would benefit from a group for children at his level and will be placed on list for a group. Then we are given a 'care plan'.

Speech and Language assessment

B has his first speech and language assessment today. He will be joining an early language group. The group will focus on his vocabulary skills, develop his comprehension of language and improve his ability to follow adult led activities. It's quite far away and I'm not happy about driving so far for a half an hour group.

I manage to persuade them to change his appointments to a more local clinic.