Those that have followed our struggle to get our Grandson, with Sensory Processing Disorder, the help and education he deserves, will be pleased to know that having spent his first year of secondary education at an excellent “special educational needs” school, he has been loving life.

 

He has made some lovely new friends, and as all his classmates have their own unique challenges, he no longer feels the odd one out, which has given him the confidence to engage more in the classroom. Lessons are taken at a much slower pace and every child is given the additional support they need, without prejudice.

He is collected each morning by the school bus, which has also boosted his confidence and given him that little bit of independence. Mum has even been occasionally letting him pop to the corner shop to spend pocket money.

So as we hit the Summer holidays, and after a lovely end of year zoom parents evening, we had regained our funny, caring, cheeky little man 💙. He enjoyed a fun filled summer of days out with his brothers and a staycation by the sea with the family.

Towards the end of one of these days out, whilst waiting in the queue for a drink, Mum turned to find him passed out on the floor 😢. She thought, as it was a really hot day, that he was just dehydrated and he came round quite quickly. However as he had had a similar incident at school at the start of the year, she contacted the Dr.

As things are these days, there was no face to face appointment, just a return phone call. The Dr didn’t seem too concerned and said he’d call back in a couple of weeks. The call didn’t happen, although to be fair, nothing had changed so a 2nd call wouldn’t have been any different from the 1st.

With the holidays over, he excitedly returned to school. He started cooking lessons and has brought home some lovely creations, from rock cakes to cheese and onion pasties and peach filled muffins, with Granddad being his chief taster 🤣 It seems he has quite a talent. Scouts reopened and off he went in his new uniform for his investiture. He loves all the new adventures and engaging with another group of new friends. He is learning new skills and his confidence is growing in leaps and bounds 💙

As we reached the half term holiday, the boys were looking forward to decorating the house for Halloween, and a week of treats,

……………………. when Li Li’s little world was turned upside down.

We had just finished Sunday dinner and he left the table to visit the bathroom. Fortunately as we were all still at the table we quickly realised something wasn’t quite right, so Dad went to see what he was up to. Unfortunately Li Li was having a seizure and had fallen behind the door and against the radiator.

Thankfully he hadn’t locked the door and we could get access to him quite quickly. Sadly the heat of the radiator had given him several bad burns. With him still not conscious Mum called an ambulance, whilst Granddad was able to stay with Li Li.

The bathroom is quite a confined place, especially with Dad and Granddad in there too. So after providing some ice to try to cool the burns & with everything as under control as it could be, the ambulance on its way, I removed the twins who were quite scared by what was happening and retreated with them upstairs

Li Li came round as the ambulance crew arrived and was so confused that he wouldn’t let them near him. It took a little bit of persuasion that he needed to go to hospital, but refused to climb aboard the ambulance, so Mum & Dad took him by car, meeting the ambulance crew there.

Initially he wouldn’t let anyone near his wounds, so he was given a little morphine to ease the pain & calm him. It obviously worked well, as at one point he told Mum he was enjoying the sunshine on the beach 🤣. Finally he allowed the Drs to take a look, and take photos to send to the burns unit at East Grinstead, before the nurses were able to dress the wounds.

He and Mum remained at the hospital until midnight and then needed to be at East Grinstead by 8 the following morning 🥱🥱. He had several visits, to peanut ward, in the first two weeks, for redressing and we prayed that the wounds would start to heal. In between visits, he made the most of the half term, trick or treating with his brothers, baking and helping me plant bulbs in the garden.

Unfortunately two of the three burns were a bit stubborn & just weren’t healing, meaning he needed skin grafts. We thought putting him under anaesthesia would be the greatest challenge of all, but although scared, he was a little champion and before he knew it he was back on the ward with Mum and on his way home a few hours later.

He has also had an appointment in respect of the seizures, and been diagnosed with epilepsy 😢. He has been started on a low dose of medication pending a CT scan & EEG. It is making him quite weary, but he is receiving the best possible care and remarkably isn’t phased by it all.

He needed a seizure care plan written by the consultant before he could return to school & scouts. It took a little while and he was desperate to return to school. Much to his delight he was allowed to do so a week after his grafts. Although he has been visiting East Grinstead weekly for redressing, he is coping really well, thriving at school, returning to scouts and excitedly counting down to Christmas 🎄 🎅  The grafts have taken well and are slowly healing. Each week a lighter dressing has been put on and a little bit more is left uncovered to dry out. He has done so well that going forward we are able to deal with the one remaining dressing at home. We need to send a weekly photo for progress to be assessed but he is one happy bunny 😉

Initially the grown ups didn’t cope quite so well. We were all emotionally exhausted for a couple of weeks, with worry and feelings of guilt. Six weeks on, and we are still reluctant to let him out of our sight for any length of time. (Apart from school & Scouts).

But despite everything else he has to deal with in life, he has shown remarkable resilience and bravery. He may be left with some slight physical scars, but we are confident he will not have any emotional ones.

We are incredibly proud of our (not so little) little man. He is facing this latest challenge head on & not letting it get in the way of enjoying life.