2022, my Year in a Post!

Here is a quick round up of our year 2022. Which was mostly health related. It seems we didn’t do much, and we spent a lot of time in hospital. But, we made it, and we know that things can only get better. So Goodbye 2022.

We started the year with a diagnosis of Autistic Spectrum Disorder for my Little Man. We knew already but it has taken us a while to get it diagnosed. The wait is really long now, I think both my other autistic children were diagnosed within months, but it’s taken years for the Little Man. Of course, the Covid years didn’t help! We eventually chose to do a diagnosis via zoom which was very strange. We had lots of online interviews with both parents alone, with the Little Man and the Little Man himself. It was still a long process, but done at home. We were told that this method could cut two years off his waiting time! Overall it wasn’t too bad and we had a very detailed diagnosis and breakdown of his needs afterwards.

Health in 2022

My entire family has been plagued by health problems in 2022. It started in January when Covid hit our house for the first time. It was my eldest son who was most poorly, we did a test at 7.30 am in the morning and had to call my daughter who was on the way to work in a hospital. She came home and did a test which was negative, but a later PCR test proved positive so it was a good job she came home instead of going to work. The ‘culprit’ was Boo, who was also positive and must have brought it home from school. She was the only person at that time that could possibly have contracted the virus. The rest of the family managed to avoid catching it. We put Boo in The Little Man’s room to sleep so she wasn’t in the same room as her sister, Star. And the the ‘infected’ managed to avoid contact with the rest of the household with designated bathrooms and a rota for the kitchen. I don’t know how we did it but it worked. It also helped that me and Graham were two weeks past our Covid vaccination when it struck.

Star, had problems with urinating in August which ended up with a hospital stay and a catheter. Several ideas were passed around for why this had happened but she was sent home with the assumption that it was caused by her Elhers Danlos Syndrome. She had slight kidney and ovary damage so we had to go back to the hospital for regular ultrasound scans. Two weeks later she was unable to urinate again so we had another four days in hospital. This time she was sent home with the catheter and told that it would be for 12 weeks. Because of her bowel problems they pushed through her appointment with the gastro-intestinal doctor which we had been waiting for for six months already.

The gastro-intestinal doctor did many tests, most of which we are still waiting for results on. He also promised that she would be having an MRI, which we are still waiting for, and if nothing could be found she’d be referred to the IBS help team. Whatever happens, at least we know help will be provided…eventually. In the meantime her bowel problems are getting worse and worse and I am more determined than ever to get some proper help for her in the new year.

She had an MRI on her spine during her second stay in hospital and they found a ‘syrinx’ on her spine. Now, I have no idea what this means and so far no-one has talked to us about it. But, I do know that they are consulting with the Children’s hospital about her spinal surgery in 2014 and hopefully they will come to some conclusion soon and let us know. I do blog about Star and myself and more details of our health issues on my Zebra Hooves blog. The link can always be found in at the top of this blog.

In October, Graham had what he thought was really bad heartburn. He suffers a lot with acid reflux and heartburn so it just seemed normal at first. But nothing eased it, the pain got worse, he felt awful and we ended up calling an ambulance because of his chest pain. The ambulance took two hours to arrive, but the paramedics were amazing. They whisked him off and he ended up spending a few days in hospital and having two stents put in. He now has to take a plethora of pills on a daily basis.

Graham managed to catch Covid while in hospital and brought it home for me and The Little Man to get our first dose. My Eldest Son also caught it for a second time but everyone else managed to avoid it. (It’s only Star who hasn’t had it now, fingers tightly crossed!) I felt really poorly but on putting my test result onto the Covid app. I was contacted by the hospital straight away and taken in for an infusion of Sotrovimab. It seemed to help and within days I was feeling much better.

Holidays and Days Out (The Good Stuff!)

We had a great holiday in Devon in August. The weather was amazing, and it was lovely being by the sea side. I really would like to live nearer the sea. In the city, when it’s hot you just feel sweaty and uncomfortable, but by the sea side the air really does feel different. Our holiday had it’s ups and downs but, overall, it was a fabulous break.

We also had some great days out. We went to Resorts World for my Eldest Daughter’s birthday and had a fabulous meal out. We Went to Stouport-On-Severn for a day by the river which was really nice if a little quiet. For Boo’s birthday we went Bowling and for a meal out. Star’s birthday was a quiet but fun affair at home because she’d only just made it out of hospital the day before. The Little Man decided on a day out to Legoland Experience and The Sea Life Centre for his birthday. For my birthday we went to the local Christmas tree lights switch on and a lovely meal out.

I had some lovely trips to the theatre starting with Don Quixote with my friend in January. We were also planning on seeing Matthew Bourne’s Nutcracker but my friend was down with Covid, so I went with Star instead. It was on television over Christmas so if you want to see something really different and amazing and you like dance, then do give it a twirl. (pun intended!)

Another of Boo’s birthday treats (and a big treat for me) was to go and see Les Miserables. It’s incredibly moving and I’m so glad I got the chance to see it. We had a little drama ourselves when my wheelchair decided to break!

I treated my Sister-in-law to a trip to the theatre to see ‘Singing in the Rain‘ and she loved it. I’d been wanting to see it for a long while so I was so glad she wanted to go with me. She’d never been to the theatre before and enjoyed it so much I’ve booked us tickets to see ‘My Fair Lady’ for her birthday treat in March 2023.

We also had a trip to Cadbury World with the kids which was fun. We’ve been before but the Little Man had been too young to actually remember it. So we went again and now I’m sure he won’t forget.

The Car

Yes, the car gets a heading to itself! In May, The Little Man had been invited to a birthday party and just as they arrived at the venue our car was hit in the side by another vehicle. It was quite traumatic but no-one was hurt badly, thankfully. The car had to go away for a while but we did get a courtesy car.

Then we had an issue a few weeks after getting the car back, the door fell off! It was the one that had been hit in the accident so they hadn’t put the door back on properly. Thankfully, it was a quick and easy fix done outside of our home.

We have a Motability car which means it is a hired car which we can swap for a new one every three years. This year our three years were up and we went to the dealership for an exchange. Unfortunately, there is a shortage of new cars and we couldn’t find one we wanted. So we were given a deal where we could keep our car for another two years and hopefully by then we can get a new one. We are happy enough with our Kuga, so it’s not a problem.

Then, in December, we became very unhappy with our Kuga as it broke down while Graham was quite a few miles from home. The weather was really cold and the radiator blew a gasket with no warning. Graham was stranded in freezing conditions for many hours, and it was a long time before we had him home again, minus the car. Because of it being so close to Christmas we had to wait for a courtesy car for nearly a week. It caused us some inconvenience, in particular with my hospital appointments. I am entitled to get hospital transport, but it was during the ambulance and nurses strikes, so I decided to delay my treatment for a while.

One more car issue. Graham helped my brother and sister-in-law move a dining table and chairs when they moved house and someone swiped our parcel shelf while he was putting it in the car. It cost us £150 to replace it! The car has to be in good condition when we return it at the end of the hire period so we could have lost our deposit which would have been a lot more.

The Queen

I’m not a huge royalist but what year it has been for our Royal Family. The Queen’s Platinum Jubilee was amazing, and even though it pains me to admit it, I remember fondly her Silver Jubilee as a child when we had a massive street party which lasted all day. No parties this year but I did make some bunting and we had a BBQ and a few party treats. I loved her little scene with Paddington Bear, it will be something fondly remembered.

It was sad to see the passing of the Queen in September, I would not have stood in that massive queue to walk past the coffin but I guess it will something that will go down in history. I did watch a lot of the funeral on television. It was a sad day.

And now we have a new King, Charles III, and a coronation to look forward to. Even if you are not a fan of the Royals, these are historical moments and hard to ignore.

Final Words on 2022

I haven’t mentioned School. I de-registered the Little Man after constant bullying was not resolved. But hopefully, he’ll be going back to school early next year. He has missed being with the other children and doesn’t learn well at home. We have help in getting him settled back into school and have started an EHCP (education, health and Care Plan) which will be useful for his future.

Boo had some real problems with school in first part of the year, but after she went back in September her problems were mostly resolved and her attendance improved massively. She is working hard towards her GCSEs and has a provisional college placement. Fingers crossed that all goes well for her in 2023, she knows what she wants and is going for it.

Star has been unable to return to college because of her health conditions. We have a provisional place reserved for her in September next year but it all depends on getting her health sorted. This is the last year she is entitled to a free education, so I’m hoping she can get this sorted. If not, then we are hoping to get her help for her future from the same social workers that are helping us with The Little Man. So far, Star has refused to meet with them, but she understands that she will have to soon.

It’s not been an easy year, mostly because of health issues. It’s true what they say, if you have your health you can achieve anything. Having so many health issues in the family makes life very difficult for us. I often wish that we could just be a ‘normal’ family. But, we have each other and we have a roof over our heads and many things to be thankful for. Life could be worse, and it’s up to us to make the most of what we have to make life better. Goodbye 2022.

I’ll see you in the New Year!