Hello all, I’m Jack’s Grandma (Nan) Angie, I was asked to do this write up by Jack’s mum, from my perspective, as this is his second time as UKIST December warrior, so here goes…
So much has happened since Jack’s last update, I’d love to be able to say amazing changes have taken place, but we are completely grateful for every little tiny improvement that he makes. A big event happened last October when Jack became a big brother to baby Isla. Jack has adjusted to Isla’s arrival, even when she climbs all over him while playing together on the floor.
Another big change for Jack was the introduction of having a PEG fitted. A PEG is a feeding tube that goes directly into Jack’s tummy, and Jack receives most of his food and water this way. He can either be fed with a machine, or manually by his parents with a syringe. Jack is now bigger and stronger as a result, and can even have a snooze in bed while being fed. Jack usually struggles to eat any food by mouth, but since watching his sister eat, he’s having little tasters as his curiosity grows and he got to try his very first melted chocolate this year; he loved it!
As a little recap from Jack’s first update two years ago: Jack has intractable (hard to treat) epilepsy with different seizure types and spasms daily. Jack’s first warrior blog He still takes various medications a couple of times a day to help keep his seizures controlled, and has his blood glucose and ketones taken every day. He’s very brave and doesn’t even flinch anymore; he dislikes sneezing more than having his blood taken! He has a SATS monitor that keeps him safe at night (which wakes his parents up more than him – usually because he’s kicked the sensor off his toe!) Jack’s medication makes him very sleepy, but only when he can hear his family during the day. At night time Jack often needs comforting several times, and can take a long time to fall back to sleep. His mum will hug and rock him to sleep while dad snores away, blissfully unaware!
Jack joined a special needs nursery last year, and loves his sessions there. He’s taken part in lots of fun sensory activities, with 1 on 1 care, spending time with other children facing similar health challenges. Jack is a very busy young man and has a packed schedule, alongside his nursery session, he has speech and language therapy, portage, water therapy, sensory inclusion sessions, physio, occupational therapy, and endless medical appointments to keep on top of. Jack has specialist equipment at home such as his Atom chair and standing frame, to help him with his posture and is currently having a bespoke bed made for him to help with positioning at night-time, and a new set of wheels (wheelchair) is in the works too! As a family we always look for positives in Jack’s situation, and try to smile through the tough times, Jack loves to giggle to remind us all of this.
However, the daily reality of Jack’s conditions is very challenging and takes an emotional toll. Alongside Jack’s daily seizures and risk of SUDEP; Jack is non-verbal and cannot communicate in words with us, so we try to read his body language and his cries. Jack’s hypotonia means that he doesn’t have the physical strength to sit up, hold his head up, stand, walk, run, roll over or anything at all really that a typical 3.5-year-old little boy should be able to do. Jack has a high risk of choking and aspiration as the hypotonia effects his windpipe too, so he needs constant supervision – not only is Nichole Jack’s mum but his full-time carer too. As a family we long for the day that Jack will be able to run around in a park playing with friends, and are holding onto that picture with hope.
In spite of life’s many challenges, Jack finds a lot to smile about such as his favourite things. He loves a lazy Saturday lie-in with his family cuddling in bed, rides out in his pram hearing all the different birds, his colourful light projector while listening to jazz music; such as Louis Armstrong, and story time with his mummy (Gruffalo is a firm favourite) and he’s always laughing – at the most inappropriate times which then makes us all laugh too!
A big thank you to UKIST for the opportunity to share Jack’s update and we want to wish readers a happy holiday season and New Year.
