Finley A's quilt    (Quilt Closed)

Theme details

Mr Tumble - Superman on the label please :)

Child Interests

Finley loves Mr Tumble and Tee and Mo the most. He watches them on YouTube. they make him happy and laugh and smile. His favourite colour is blue.

Biography

Finley has cerebral palsy and HIE brain damage from his birth. It was very traumatic and he sustained a brain injury as a result of it. He had a very long resuscitation. He went 22 minutes without a heart beat and had a 45 minutes resuscitation to get him stable. Because of that he also has drug resistant refractory epilepsy called Lennox-Gastaut syndrome.

He can have up to 50 seizures a day, he can’t walk or talk, he’s non verbal, and he has an unsafe swallow so he’s fully tube fed and nil by mouth. His epilepsy has got worse as he’s got older. He has lots of different types of seizures including myoclonic jerks, tonic seizures, absent seizures, also has drop seizures. Many of his conditions are life limiting so he attends our local hospice for respite and is under the symptom management team.

He is often in pain from his dystonia and when his tone changes. He can only communicate this to us by crying and by laughing when he’s happy but life is very difficult for him. One of the main reasons is the drug resistant epilepsy - he’s on so many meds for it but they don’t get on top of the seizures, just give him side effects unfortunately. He often gets aspiration pneumonia from being sick and aspirating it so he’s often in hospital on iv antibiotics to treat it. He also has a lot of daily oral suctioning and we do daily chest physio. We have a plan from the respiratory Physios. We have a lot of unplanned hospital admissions and planned visits - it’s just part of Finley’s life.

Patterns

Squares received

Card

Stitched by: Jan Garton