Glenn was born June 2015 (39 weeks) by scheduled c-section after a difficult pregnancy that saw complications occur in the third trimester. Glenn was breech, surrounded by excess fluid and scans showed dilated ventricles on his brain. When Glenn was born, he required resuscitation and was rushed off to the neonatal unit. He had low muscle tone and no sucking reflex, and remained in the neonatal unit for almost a month before he came home. Initially they were unsure why Glenn was unwell, on Day 6 in the neonatal unit a paediatric neurologist was called in to examine Glenn, due to his low tone and facial characteristics, myotonic dystrophy was suspected, tests were arranged, which came back positive. Glenn was 2 weeks old when we got the confirmed diagnosis. We had never heard of it prior to them, however, as myotonic dystrophy is genetically inherited, 99% of the time it comes from the mother, we went through genetic counselling and testing, sure enough, I too tested positive, and upon review by a neurologist it was confirmed that I have the adult-onset of the disorder – it explained a lot with regards to ongoing health issues that I have had for a while.
When Glenn came home, he was tube fed, in the meantime we persevered with bottles as well and his bottle feeding gradually increased, by the time he was 9 weeks old he was taking full bottle feeds. When he was a few months old his head went through a phase of growing rapidly, our visiting nurse was over regularly checking his head circumference. Glenn underwent an ultrasound which showed the ventricles were still dilated, and at 7 months old he had an MRI to check for blockages. No blockages were found, confirmed communicative hydrocephalus. At present, his head growth does appear to have plateaued, however it is under regular surveillance.
Glenn is under quite a few different teams which he has regular appointments for - paediatrics - neurology and surgical, orthopaedics, audiology, cardiology, ophthalmology, physiotherapy, speech & language therapy, orthotics, child development team and soon to be ENT. Glenn has had a couple of hospital stays this year due to pneumonia which also takes its toll when this happens. A lot of things at present are wait-and-see due to the variables that can happen with this disorder. His physical milestones are delayed, at 17 months he is still not crawling, he is learning how to weight bear in a multi stand, and we are currently doing regular physio sessions with the child development team (land-based in autumn/winter, and hydrotherapy in spring/summer) which Glenn and I really enjoy. Cognitive-wise he is a little delayed, however he does say a few words, babbles a lot, and laughs, despite his challenges, he is a very happy little boy.