Day 7 of Holidays

It was an odd day of weather yesterday as storms were forecast and kept threatening, as the sky would turn black but in the main, we had sunshine. During one of the sunny spells, we walked along the seafront with Joshua letting him take the lead. he walked hand in hand with his Dad, while I had the dogs on a lead. Joshua decided when he needed to sit down and he made the most of the many benches along the seafront, choosing to sit, with his legs crossed and admire the sea view.He enjoyed being in charge of the walk and resting places. Again he walked quite a distance, before we decided to turn around as the sky had turned black and threatening. We sheltered from a brief rain shower in a cafe, where the dogs were allowed to sit quietly under our table, then carried on with our walk home.

Joshua had a nap and later we headed out again, this time to a cafe for afternoon tea. Joshua was delighted to get there, it is a favourite holiday haunt of ours so he started shouting ‘thank you’ as soon as we parked the car. He was excited as we walked in and sat down, waving at other customers so I was hopeful that he would eat and drink. But he got restless while waiting for his orange juice and victoria sponge to arrive, and I had to take him outside for a run around, to burn off some energy, as he was swinging on his chair and generally messing around. That did the trick as he both ate and drank once he got back inside, so we were able to enjoy our cream tea more. He was very taken with the young waitress, with a pony tail, and he stood waving at her for a while as we were leaving, but she did not see him. I suggested that he move so that she could see him better and try again, which he did and then he got the response that he was waiting for and only then, were we allowed to leave.

On the way back, we stopped at the hill where my parents ashes are now scattered, to let the dogs and puppies run around, although now it was very gusty up there. As we started walking, we saw a magnificent rainbow appear in front of us and the end was just over the place where we had scattered Mum’s ashes just days earlier. It is such a beautiful symbol of peace and it was there, just where, and when, I wanted to see it.It greeted us briefly then, as we walked towards it, it disappeared again, but it was there long enough to work its magic and to tell me that all is well. With rainbows and butterflies, it is certainly a very special place and it is a location where I too would like my ashes to be scattered when that time comes.

rainbow on Culver

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Day 4 of Holidays

Joshua had another late lie in yesterday until after 10 am.Not only do they mean that he is well rested once he finally gets up, but it gives us some Joshua-free time too. I enjoy my early morning dog walks and I am confident that both boys will still be asleep when I get back again, so I am not even missed. I was on the telephone to BT about broadband when Joshua appeared expecting some breakfast. This week he is getting at least 12 hours sleep, typically 10 pm until 10 am which has to make him feel better and more alert.

We decided yesterday to go for a walk, with the dogs, along the prom to the next town along, which is about 2 miles away. We walked along the prom, one of us either side of Joshua holding his hands, with two dogs on the lead too ,as they are not allowed on the nearest part of the beach in the summer, and Joshua strode out happily. My husband carried the rug in his rucksack so that we could rest on the beach whenever he needed to and when we got the first part of dog-permitted beach, Joshua sat on the rug to recover while I played ball with the dogs. A brown jack russell cross began to chase Kevin around in large circles and they enjoyed a lot of exercise together as we looked on. His owner came over to talk to us to tell us all about her dog Max , who had been bought to calm down their autistic daughter, who also had epilepsy. The dog was a beloved family pet but had not had the desired impact on their daughter. I hear of several families who hope that a dog will have a beneficial impact upon  a child with learning disabilities, as everyone has heard the tales of miraculous transformations that a pet has brought about. It is however a big responsibility on a puppy and I worry that it is not a guaranteed outcome but should be regarded as a bonus if it does happen.

Once rested, Joshua was more than happy to walk along the sands until we reached a cafe for lunch, where we sat outside in the sunshine overlooking the sea. We had not quite made it to the next town but almost, and we knew that Joshua would have had enough by the time he got back again, so we re-traced our steps back, this time stopping at another cafe for an ice cream. Our holiday cottage is at the top of a steep hill just above the beach, and spurred on by knowing where he was, Joshua scaled that hill and was less out of puff than his parents! I cannot recall how many years it is since he last walked up that hill ,so I was so proud of his determination and his exertions. He curled up on the settee for a nap when we got back to the house, but what an achievement and it has to be better for him than being pushed about in a wheelchair. It is better for my husband too as he is getting heavy to push uphill – I can no longer manage it and always defer to my husband, while I will happily push him on the flat. But his wheelchair has not yet come out of the car boot on this holiday, we carry it for emergencies only so I really hope that it stays there all fortnight.

 

Walkie Talkie

When Joshua was 4 days old, the consultant starkly told me that he had devastating brain damage and as a result, he might not see, hear, talk or walk. I have covered the other skills in the last three days, so finally, let’s explore Joshua’s walking: Joshua was a large one year old and he was not inclined to move much, even though he enjoyed bouncing , all the time, when we held his hands so we knew he had strong legs and knees. We had a physiotherapist come to the house, to work on his right-sided weakness and she suggested that he had a splint, to support his right leg and to encourage him to walk. We agreed and he got a tiny plastic splint – like the back half of a wellington boot ; it was royal blue with colourful planets on it. This now made his right foot much bigger than his left and so we went to Clarks’ shoe shop and accessed their odd shoe scheme, where we could buy two different sized trainers, for less than two pairs of shoes. This splint gave Joshua the support and confidence that he needed and at around 18 months old, Joshua began to walk, which seemed miraculous at the time.

Once he was walking, there was no stopping him, he was fast and he was confident. I can remember walking up our lane with him and my mother in law and she was anxious that he might fall and wanted to hold him back, for his own safety. But I was thrilled by his mobility and if he fell, which he rarely did to be honest, he would just pick himself up again. The faster little Joshua walked, the tighter his right arm would get, until his hand was tucked up into his armpit with the effort and concentration. We saw that if he did fall over, he could not, or did not, reach his right arm out to save himself.

The splint definitely got him up and mobile and then he had several years without one, when he just wore sturdy shoes. But the physio kept a close eye on him and when he was at his first special school, so he would be around 8 years old, she recommended another splint – or AFO as the experts call them – as his foot position was becoming contorted and needed some help to straighten it out. I was not phased by the suggestion as I knew how his first splint had saved him and so he was cast for a new splint, with the same blue planet pattern for old times’ sake. Now that he was bigger and it was having to work harder to pull his right foot straight, he had more issues with it rubbing and hurting him at first. I do not even remember the timeline now, but he moved into two splints and he had botox in his  legs to encourage the tight muscles to relax and be trained into the correct foot position.

The botox  and physiotherapy had limited impact and his orthopedic surgeon suggested that only surgery would now help his contorted, twisted right foot position. We had an appointment to discuss this corrective surgery, when he was about 12 years old, but as my husband correctly pointed out, how could we explain to him that he could not weight-bear for so many weeks after the procedure and how could we take care of him post-surgery. At the same time, Great Ormond Street hospital were talking to us about brain surgery for better seizure control and, unable to handle both procedures, in 2014 we prioritised his seizure control over his mobility. We were warned that one side-effect of the hemispherectomy was tightening of Joshua’s right limbs, but we decided that he had no fine motor skills in his right hand anyway, so there was nothing much to lose there, and we went ahead.

Post surgery, Joshua struggled to walk and the surgeon reassured us that it would come back, with physiotherapy input and he expected him to walk out of GOSH, the same way that he walked in. However sadly that was not the case, and when we were discharged, he could still barely walk, we had to have an emergency OT visit to organise equipment for home and we moved his bed downstairs and my husband fashioned a bath on wheels that we filled with a hosepipe, so that he still enjoyed baths, but in the hall now! With physio and persistence, Joshua mastered the stairs again in over a year of sleeping downstairs. He was fitted for new splints and this time, in big, clumpy NHS boots with a raise, which compensated for the evident difference in his leg length , so they tried to even him out.

Last year, encouraged by the physiotherapist, we had an appointment with the orthopedic surgeon again, to see 5 years later on, how surgery could give him comfort and better posture with his right foot. We were bluntly told that there is nothing that can be done for Joshua as he still could not tolerate the non -weight bearing after the surgery and should he walk on his foot too soon, he could do irreparable damage and be confined to a wheelchair for the rest of his life.

So we are where we are now : trying to get callipers that fit him, without rubbing his feet, as he has outgrown splints. Joshua is incredibly fast on a flat surface, particularly if he is running away from you, down a school corridor or a supermarket aisle for instance. We take the wheelchair when we are out and about  as he does not have much stamina since his brain surgery and in case he should have a seizure, but lately he has taken to pushing his own wheelchair and walking, until he is too tired and has to sit down.  Joshua is mobile but his gait is awkward and lopsided, but he gets around, so in that way, he has defied that initial diagnosis when he was 4 days old and his determination, makes me proud everyday.