Thank youA very big thank you to all the amazing stitchers and quilters for Alexanders fantastic quilt that arrived at his hospital bed today!
We took a selection of squares rather than one theme, so that it can be a memory quilt, & I thought you may like to hear a bit about each square:
The Cat picture because we have a cat called Smudge and he very much favours Alexander - its cupboard love for my husband & I, but Smudge gets up on Alexanders bed and curls up on his feet; he sits between Alexander and anyone who comes in to see Alexander that the cat doesn't know, like therapists, and he watches from a distance if there is activity going on with Alexander, as if overseeing it to make sure he is ok.
Peter Rabbit because we have read lots of the Beatrix Potter series and watch/listen to the new cartoons & are looking forward to seeing the new film). Alexander also has a cousin called Peter, who can be a bit cheeky and is full of energy, so we can also talk about his cousins from this square, as well as Peter Rabbit & co...
Penguins, We have been to the zoo a few times and repeatedly the penguins are one of the few animal exhibits that we really feel he can see - I guess because they're very bold colours distinctive from their enclosure.
Dinosaur collection with T Rex, Obviously every little boy loves Dinosaurs and the Julia Donaldson book Tyrannosaurus Drip is a popular one here along with her other books, including the Gruffalo!
Boy flying kite, We enjoyed a lovely family day out on the downs flying Alexanders bright rainbow kite with his cousins! There wasn't that much wind, so we all spent a lot of energy running around like mad trying to get some air into the kite!
Musical star, Alexander has always responded well to musical type activities, so long as they are quite gentle (so guitar/piano, not drums!) And we have enjoyed lots of little play groups, music therapy sessions & I will often sing to him when we are cuddling our way through a bad night of seizures or pain. Twinkle twinkle is a nice quiet, gentle one that we enjoy often.
Paddington sitting on the suitcase, This was our first family cinema trip to watch Paddington and it was such a success we want to repeat this when Alexander is feeling better, as he has not managed much outdoor activities for a while because of his discomfort when the ground is rough or uneven.
Harry Potter, We have just enjoyed all the Harry Potter audio books and they have really stimulated Alexanders imagination- so much so that he helped tell an adventure story he made up at school a couple of months ago. I am sure these will be a story we will go back to - but Alexander loves stories being read to him and it makes birthday and Christmas fairly easy for gift suggestions, as we love people to gift their childhood favourite books.
Turtle, When Alexander was a baby, he used to stretch and turn his tiny head in such a manner that his neck sometimes looked wrinkly, and we affectionately called him our little tortoise/turtle.
Giraffe, Another zoo trip, we were up at giraffe head height, feeding them branches of trees. Their heads are very big when they come near you & its safe to say they probably grew a long neck to get away from the stinky smell they make! Hahaha! Alexander definitely wrinkled up his nose in their and did not think it was a nice smell! He particularly enjoys sniffing scented candles, especially fruity and citrus-y ones! He will definitely let you know when he likes one! We can while away a fair bit of time in shops and garden centres doing this - & can become an expensive habit if we get carried away! Fortunately tea light candles get as much reaction as the big ones! :-)
Nemo, another popular destination we enjoy with Alexander is the sea life centre - its atmospheric and plenty of large displays for him to see. A lot of the displays are above him, which is where his vision is best & it is in a lower level lighting, which enhances the contrast for him & his vision is better then too. Bright coloured fish are much easier for him to see and we can also visit local aquatic stores to look at bright coloured fish like nemo and goldfish/koi.
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BiographyAlexander was born at full term, at home, and apart from being very sleepy and a poor feeder, he seemed to be well and was just perfect.
At 3 days old, their was something obviously wrong and we rushed him in to hospital, where he was ventilated within a few hours and loaded with phenobarbital as he was having seizure activity.
We were transferred to NICU and for days they ran lots of tests, eventually getting the diagnosis. Alexander was not expected to survive off the ventilator, so he was extubated at home, at our request. He kept breathing, for days we were on edge, still believing we didn't have long, but he got stronger and we found out that he may survive for a year, 5years, almost certainly won't reach adulthood - & that he would likely have very hard to control epilepsy.
That, sadly, has been the case, and Alexander has many seizures every day, but he is strong, calm and content and just deals with them (probably better than we do). His condition (& the seizures) have caused brain damage, which means that Alexander is not mobile and cannot speak. He cannot move his arms much either. To people who know him well, he communicates with his facial expressions and body language - & like all children, definitely knows "NO".
He has had many painful conditions (bladder retention and spasms; leg cramps; severe reflux; food intolerances; hip and spine issues - more noticeably now, he has compression of his lower discs - L3:S1 and possible sciatica) and illnesses, including pneumonia. He is tube fed when unwell and when he is tired/in pain, but loves strong flavoured foods like bacon, curry and chilli when he is really well and alert.
He loves to be cuddled and have physical contact; he has shown interest in the various animals at the school farm and pets of family and friends; he loves a good story read to him - we love Julia Donaldson rhyming books, Harry Potter series, David Walliams books including Gangsta Granny and have even enjoyed The Hobbit, The Three Musketeers series, Treasure Island, The Railway Children, etc.
His other great enjoyment is Nature Documentaries, especially those narrated by David Attenborough, Blue Planet, Planet Earth and others.
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