Rose's quilt    (Quilt Completed)

Thank you

Rose received her lovely quilt a few weeks ago, she absolutely adores it. Rose doesn't tend to get attached to blankets and teddies but she goes to bed with it every night. When it arrived, she instantly rolled over on it and snuggled into it, she then put her toys on it so she could stay there.

It is absolutely beautiful, thank you so very much.

Finished photos

Individual squares

Card

Stitched by: Marilyn Foyle

Biography

Rose was born with a sacral dimple and strawberry birthmark both on the lower back/bottom area. These are usually checked with an ultrasound and further investigation should anything show abnormal. This was not done. Rose was checked at the 8-week newborn screen with the GP and mum was asked to show the birthmark and dimple to the GP by the health visitor. The GP didn’t refer Rose for further investigation and decided it wasn’t vascular and didn’t need following up.

At 8 months old Rose became very poorly. After a week of back and forth to the GP and local hospital Rose’s left leg stopped moving and became very cold. She was sent to the childrens hospital in Leeds where investigations took place. After a CT scan it was discovered Rose had hydrocephalus and an MRI scan was done to find the cause.

Rose had lesions from her sacral spine to the thoracic spine. It was thought this was either tumours or abscesses. It was extensive intradural abscesses. Rose was not emptying her bladder and intermittent catheterisation started. After 2 months in hospital Rose was discharged but readmitted 2 days later with potential shunt malfunction. Rose rapidly declined, she had no shunt issue but a UTI. This resulted in sepsis and was treated with antibiotics and fluid bolus. Rose spent time in ICU with septic shock and tachycardia. Rose recovered and was discharged with new medications for bladder and bowel and an indwelling catheter prescribed to use at night time. Mum and dad were trained on intermittent catheterisation and now indwelling/foley catheters.

Rose was referred to physiotherapy, occupational therapy, ophthalmology, child development reviews, paediatrics, urology, orthopaedics for leg and spine, shunt nurse and urology CNS.

Rose has been through multiple surgeries on her brain and spine, and is waiting on future surgeries for other areas, she is so brave and resilient, nothing phases her even now. We think she appreciates the small happy times she has which for 3 is beyond her years.