Blog

Over the course of the last few months Harriet has been experiencing episodes of twitching or jerking  for no apparent reason, these episodes seem to be slowly increasing on a daily basis and we have concerns that Harriet`s condition maybe getting worse.We informed  Harriet’s  paediatric consultant Dr. Shiva Shankar at Derby  Children`s Hospital a couple...

Harriet woke up to her first Birthday this morning, it felt as though we had got to a real milestone with Harriet and were just glad she was still with us .We took Harriet downstairs and slowly opened the presents that we had brought for her, Harriet`s eyes instantly started to...

Harriet had an appointment with her overall consultant at Derby Children`s Hospital Mr. Shankar this morning, to see how Harriet was developing.We arrived at the Derby Children’s Hospital just after 11.00 am ,  we went through to get Harriet measured and weighed before we saw the consultant .Harriet had been experiencing an...

Harriet has been struggling with her current car seat as it will not recline enough, this in turn was causing her head to fall forward and either block off her tracheostomy or Harriet would start to excessively secrete, which was extremly dangerous when travelling in the car .The occupational therapist at...

Harriet`s Nasal Gastric Tube is once again causing her problems, the water proof Duoderm tape that holds her NG Tube onto her face has been getting wet with saliva and slowly lifting off her face . Once the tape gets wet then they have to be removed from her face and...

Harriet had been referred to see a back surgeon at the Queens Medical Centre in Nottingham at the end of April by one of the Genetics team at Nottingham City Hospital and we were quite anxious to see whether the surgeon could help Harriet.We arrived at the QMC at 10.00am this...