Freddie absolutely loves Mr Tumble, he learned his Makaton signs from him and knows most of the episodes by heart. He likes bright colours and sparkly or shiny things.
He loves reading books particularly Julia Donaldson books, he knows them by heart and if you read a word wrongly he will correct you.
He also loves Paddington Bear, he has had a Paddington comforter since he was in NICU and now has everything Paddington and Mr Tumble we can find.
Due to his difficulties he becomes very fixated on ‘familiar things’ and becomes quite obsessive. Mr Tumble and Julia Donaldson are his happy place.
Freddie was born 11 weeks early, initially he was doing really well in NICU then at 10 days old he deteriorated. He was diagnosed with NEC necrotising enterocolitis, a life threatening bowel condition at 2 weeks old and wasn’t expected to survive. We were told surgery wasn’t an option for Freddie as it affected all of his bowel so we had him baptised on the unit and said our goodbyes. He kept fighting for a week then he perforated his bowel, they offered us surgery but were told there was less than 5% chance he would survive. We felt because he had fought and defied the odds we would take the risk of surgery.
He survived surgery but was left with a very small amount of bowel needed to absorb nutrition and fluids. We were told he may need a liver and bowel transplant and would probably never eat or drink.
We spent nearly 8 months in hospital and he continued to exceed expectations and we finally came home on intravenous nutrition. This means he has a central line that goes directly to his heart where we give his PN - parentral nutrition overnight. He does eat and drink as well but doesn’t absorb enough due to his short bowel syndrome.
Freddie showed signs of significant delay which we expected due to his long admission. However, it became clear to us it was more than that.
When he was 18 months old they realised he was severely visually impaired in his left eye and short-sighted in his right eye, so he requires patching therapy and wears glasses.
Due to his continued significant delay he had an MRI scan when he was 2 which showed he had PVL brain damage most likely caused by his prematurity and NEC. He then received a diagnosis of cerebral palsy.
Freddie has just turned 5 and is doing amazingly well. He uses Makaton signs as well as talking. He walks with his walker and uses his wheelchair when he gets tired. He still requires his PN but is only on 4 nights now not 7. He attends nursery with a 1:1 and really enjoys it. He struggles with social/emotional interaction and was due an assessment for possible autism but it has been delayed due to the covid pandemic. Freddie has had a lot to deal with but he does it with a smile on his face.