The Trials and Tribulations of a Special Little Man Called Eiden.

The Trials and Tribulations of a Special Little Man Called Eiden. This is a journal of Eiden's life with a diagnosis of galactosyltransferase 1 deficiency, SP-EDS, B4GALT7-CDG & Autism

Eiden is a special little man that suffers with complex medical needs including cleft palate, phagiocephaly, ventricular assymetry, osteopenia (previous fractures to ribs and currently multiple compression fractures in his spine), scoliosis/rotated rib cage, bilateral radioulnar synostosis, penoscrotal web, agranular neutrophils and platelets, marked hypermetropia, profound hypotonia, hypermobile

joints, global developmental delay, gastroeosophagal reflux, gastrostomy fed, viscious secretions and apnea episodes at night& migraines. http://www.youtube.com/watch?v=Skvd5XnVUR0

Impromptu drive to Wareham and motorboat hire with The Wareham River Boat Co. Missed the rain šŸŒ§ļø Eiden was quiet (in pai...
16/05/2026

Impromptu drive to Wareham and motorboat hire with The Wareham River Boat Co. Missed the rain šŸŒ§ļø
Eiden was quiet (in pain) but a few big smiles, especially feeding the swan & ducks.

Eiden has been doing incredibly well emotionally & socially of late. His talker has really opened up his world. Heā€™s rea...
16/05/2026

Eiden has been doing incredibly well emotionally & socially of late. His talker has really opened up his world.

Heā€™s really loving his activities... long walks, scooter drives, kayaking, ā€œclip clopsā€ wagon rides ...and afterwards heā€™s able to properly relax watching films or sitting watching the birds in the garden.

Heā€™s very slowly letting go of the old house. He still asks about it when heā€™s unsettled but thereā€™s now an acceptance that this is where he lives. Unfortunately that acceptance is still for the lounge rather than his bedroom but weā€™re not putting pressure on it. Its an unconvienience as once the night carers arrive we feel obligated to go to our bedrooms. If only i would ho to sleep then!

Since the move he still hasnā€™t shown any interest in his guitars, ukuleles or even his favourite chair... I darenā€™t get rid of any of it just yet but do we really need all 5 guitars & 3 ukeleles?! (He does know they are different sounds)

School is his stability & routine and lovely to see certificate's like this. šŸ˜Š

Eiden has become a firm fan of N & J Heavy Horses wagon rides in Burley. Today's horses were Hamish & Hector with his go...
03/05/2026

Eiden has become a firm fan of N & J Heavy Horses wagon rides in Burley. Today's horses were Hamish & Hector with his godfather as his dogsbody!

Foal season in the New Forest so some drive by pics.

Eiden decided he was needed in the role of coxswain to motivate Drury to paddle faster. šŸ¤£
02/05/2026

Eiden decided he was needed in the role of coxswain to motivate Drury to paddle faster. šŸ¤£

Eiden's favourite activity (he's even accepted wetsuit boots today)... I can hear his excited yips across the Quay!
02/05/2026

Eiden's favourite activity (he's even accepted wetsuit boots today)...
I can hear his excited yips across the Quay!

Todayā€™s scooter ride may have officially pushed me over the edgeā€¦ I think Iā€™ve reached the age where I no longer require...
01/05/2026

Todayā€™s scooter ride may have officially pushed me over the edgeā€¦ I think Iā€™ve reached the age where I no longer require excitement.

What started as a bold ā€œletā€™s explore Longham Lakesā€ with the optimism of "what could possibly go wrong if we just follow the bike routes?" quickly descended into "will I ever see home again?"... numerous padlocked gates, kissing gates and increasingly questionable tracks that were definitely not designed for bikesā€¦ let alone mobility scooters.

We somehow ended up on narrow, rutted footpath, completely boxed in with no way to turn around. Every turn either climbed a steep bank, vanished into the abyss or looked like it hadnā€™t seen another human in years.

Never actually saw the lake tho circumnavigated most of it!

As panic began to set in, I rang Miles and asked him to come rescue usā€¦ only to discover he was in Tescos. šŸ¤¦šŸ»ā€ā™€ļø

So, pulling my big girl pants up, we carried on at a snailā€™s pace and stumbled back into civilisation through what can only be described as a narrow gate of salvation.

I then made the executive decision to stick to actual roads and sensible tracks for the 3 mile journey back.

Eiden absolutely loved every second.
Not sure if my back or the scooter is in need of most repairs now. šŸ„“

I think next timeā€¦ weā€™ll just go to the park@

Not only did he fall asleep in his bed/bedroom for the first time last nightā€¦ he stayed there all night... and heā€™s stil...
30/04/2026

Not only did he fall asleep in his bed/bedroom for the first time last nightā€¦ he stayed there all night... and heā€™s still in bed with now just 10 minutes before school bus arrives! (He's normal wake up is 4:30)

The was after a challenging evening but what a WIN!

"Using his talker to make lots of independent choices & turn taking in a game of skittles."
17/04/2026

"Using his talker to make lots of independent choices & turn taking in a game of skittles."

Eiden has slept the last two nights in his bedroom!!! šŸ™Œ Weā€™re not quite ā€œthereā€ yet... heā€™s still falling asleep in the ...
17/04/2026

Eiden has slept the last two nights in his bedroom!!! šŸ™Œ

Weā€™re not quite ā€œthereā€ yet... heā€™s still falling asleep in the lounge, then we wait until heā€™s in a deep sleep and carry him through. Before, he would wake, cling to the bedroom door frame and refuse to go in or wake in a panic once in bed and take himself straight back to the lounge.

The past two nights heā€™s woken briefly while being moved but with a couple of minutes of gentle reassurance with a bum pat heā€™s settled back to sleep. Weā€™ll stay at this phase for a few weeks before working towards a bedtime routine to fall asleep in his own bed.

Heā€™s still using his talker to ask for ā€œhomeā€ a LOT which is torturous looking at his sad face. He accepts its 'not available'. The words he doesn't understand but he is understanding the implication that 'its not happening'.

This journey has been long and exhausting & we've a long way to go. His anxiety around transitions is incredibly high and itā€™s taken over 18 months of actively trying to move house, to get here. (We are officially living in the bungalow and he not been to the old house in a little over a month)

A lot of surrounding roads & routes are a trigger. After kayaking in the place we went last year, he was excited thinking we were going 'home' and got upset when we didn't. There is a lot to undo in his little noggin!

Weā€™ve asked for help all along... school have supported him with communication but weā€™re still waiting for CAMHS input to help with his anxiety, (which can lead to self harm (biting) & aggression to others)

The process has also had a huge financial impact and weā€™re not out of the woods yet while we wait for the old house to sell.

But long term, this was something we had to do so he can stay at home into adulthood.

"Progress is progress, no matter how small"

Bluebell woods at Pamphill was a bit disappointing today. You can only view from 2 spots as its all been fenced off to p...
10/04/2026

Bluebell woods at Pamphill was a bit disappointing today. You can only view from 2 spots as its all been fenced off to protect the bluebells.

I do get it but it took the shine off what is usually such a lovely wander.

Eiden had a meltdown and then just plain old grumpy. He was asked prior 'drive' or 'bungalow'... he answered 'something at home'. šŸ™„

At his dads for the weekend so 2 days relief with no "home... home... home" šŸ„³

10/04/2026

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