100 Days Later (part 10)

You may notice that the blog title has changed! 84 Days Later has now become 100 Days Later due to the Government extending shielding until 30th June. A lot of mixed messages again from Boris and co this past week and I feel a lot of the announcements have been to deflect the attention from Dominic Cummings. Let’s give the public something back and put them even more at risk! As of yesterday (1st June) most of the general public returned to a sense of normality after their ‘lockdown’ period. You can now have up to 6 visitors in your garden but if you’re a family of 4 does that mean you can only have 2 visitors? They never really quite explain it in detail do they? The lack of clarity strikes again! What’s also increasingly frustrating is the amount of people that continue to flout the rules, the announcement was made on Thursday 27th May and due to the sunny weather we could hear groups of people happily gathering in other peoples gardens! Hey, I’m all for people having a good time but when you’ve been confined in your own home for 10 weeks you can’t help but feel a bit pissed off! You only had to wait a few days!!!!

Haircut One Hundred

Locks Down Barber Shop

A few ‘firsts’ have happened in the house this past week. Alfie has very thick hair and like mine as a child it doesn’t grow long as such, it just grows thicker and thicker. My nickname for it as a child was ‘Microphone Head’. It was time to call in the Barber. The Barber being me! A quick call to my Dad to borrow his hair clippers and then it was time for action. The Mop Top was about to become a Cropped Top. It took a while to get through the mound of hair on Alfie’s head but as you can see in the pictures above I think I did an alright job! Obviously once Alfie was all neat and tidy he immediately moved onto me having it done! Now I’ve shaved my head twice in the past, the first time was 20 years ago when David Beckham made it look cool (I had a number 1 all over!) and the second time was when I thought having blonde highlights in my hair would really suit me. They didn’t and I subsequently went back to the hairdresser the same day and had it all shaved off! (Thanks to my sister, Janine for reminding me of that one!) Anyway, I had a number 4 all over which then went to a Number 3 the next day as it didn’t look quite right! Now when I was was shaving it, I envisaged mine to look like Alfie’s. A perfect hairline and golden brown hair, unfortunately I had to make do with more grey hair with a slightly receded hairline. More George Clooney these days than David Beckham!

Hi-de-Hi!

Hello Campers!

Well as we won’t be going on holiday this year, we decided to bring it to our back garden. We had a video chat last week with fellow Duchenne parents, Bernie and Rachel and we got onto the discussion of holidays. They mentioned they had a tent which they hadn’t used for a good few years and we were welcome to borrow it so we could have an adventure. Bernie very kindly drove over on Sunday morning from Blackburn and dropped it off (at a very safe distance). By Sunday afternoon, our tent was all set up and our camping adventure commenced! After the Burgers, Fries, Chicken Kebabs and snacks came lots of bedtime stories followed by going to sleep on the first night with Alfie waking up at 4am saying he was cold! Back inside to the comfort of our own beds! The following evening was much more successful and we managed to sleep through as extra layers and duvets were provided by the camp site!!

Zoom calls

I have found the Zoom calls to be a great stress release and every Wednesday I meet up with my mates and usually we partake in a weekly Facebook quiz. We then have a good catch up and a moan about the previous week! Just to break it up, we decided to follow the lead of Lineker, Shearer and Wright with their Match of the Day Top Ten’s and host a football debate. I compiled a list of ‘Favourite Football Moments’ for them to choose from. We all donned our retro footy shirts and each selected (and discussed) our selections of favourites ie player, goal, match, kit etc. It was so successful that we’ve decided to carry it on this week. The first weeks list was as follows so please feel free to join in by leaving your comments on the blog page or in the comments on the social media page. I know football isn’t everyone’s topic of discussion but you could choose your Top Ten’s in Music, Films, Books etc.

Choose your favourites

Well that’s about it for me this week. Enjoy the rest of your week.

Stay wherever and be whatever you want to be!!!!

Kieron

#duchDad

84 Days Later (part 7)

Defying the odds?

On 7th May 2016, Leicester City played their final home game of the season against Everton. After that game they received the English Premier League trophy in a season which they defied almost uncertain odds. In the stadium that day there were 32,140 people. Picture in your head the football stadium pictured above packed to the rafters. The harsh reality today is that almost the same amount of people in the stadium that day have now lost their lives in the UK to Coronavirus. Alarmingly, a percentage of people in the UK continued to ignore the Government’s advice this weekend whilst celebrating VE Day and still think they can defy the odds that Coronavirus won’t affect themselves or their families. I’ve seen clips online of large mass gatherings dancing the conga and as I’m writing this a whole street doing Oops Up Side Your Head! In 2 weeks or so those people may pay the consequences and unfortunately so might many other innocent people.

Close to home

For us personally, it’s getting very close to home as an elderly couple who live just 3 doors down on our street have both had Coronavirus, thankfully they have both made a full recovery. 10 weeks on from the first reported death in the UK, it’s still here and it’s not going to go away anytime soon. If the way people have ignored the lockdown this weekend then in another 10 weeks we maybe looking at a death toll that would fill Old Trafford (approx 75,000).

In this period of time, the entire world has had a glimpse of what it feels like to be a patient and parent with a terminal diagnosis—to be told potentially there are no tests, no treatments, and no answers. The Coronavirus response shows how much more we can do to change the system and fight against terminal illnesses. Now perhaps people will understand a little what having a child with Duchenne feels like. c/o Raising Reed Facebook post

Frustration

I have to say this week has been the toughest of all the weeks we’ve been in self isolation. It now feels as if there is no escape. In fact there isn’t. You personally maybe self isolating but you have the option of leaving your property to go out and do a bit of exercise or call at the supermarket. I can imagine it’s quite literally a breath of fresh air to get away from your partner or a break from the kids constantly screaming at you for a snack! We all need that space! Unfortunately we don’t have that kind of luxury and the frustration of this has definitely crept in this week. Self isolation has pushed many of us to spend more time with our families than ever before. We’ve had to find the solution as to how we work, parent, home school and simply get on as we move through the same rooms all day long. This would quickly deteriorate even the most stable of relationships! A simple fix to this problem today was quite simply the warm weather and a hosepipe sprinkler! It’s not always that simple!

Choose your battles wisely

On Tuesday evening, we endured another of Alfie’s night time behavioural meltdowns and it went on for almost 3 hours. A small trigger of simply not wanting to get into bed at 7.30pm resulted in him only going to sleep at 10pm that evening thus leaving us both physically and mentally exhausted. So much so I retired to bed as I literally had no energy left.

Problematic behaviours are quite common in all preschool children, and boys with DMD are no different. However, young boys with DMD may have more difficulty with impulsivity and emotional control than other children their age. They are also more likely to be rigid and inflexible in their thinking, which can result in noncompliance or arguing. They may have difficulty making transitions. They may also be taking steroid medication with side effects that can impact their behaviour, such as making them more emotional and active than normal. c/o Parent Project MD

Unfortunately, it continued into the next morning for over an hour as I took a stand against his behaviour and took away the TV remote control. A battle I was never really going to win. This prompted Louise to speak to an educational expert (whose son also has Duchenne) a couple days after this latest incident and he stated that in this scenario you have to choose your battles wisely. His advice for the future is to take Alfie out of the situation, maybe downstairs for a while to calm him down then once he’s settled down take him back up to bed. Wise words when you’re not in ‘the moment’ but when you’re physically and mentally challenged after a long exhausting day it’s difficult to know what to do for the best. For us as parents these are all learning curves and almost the same as having a newborn baby, everyday is different and we’ll come up against a new challenge daily.

New logo

I decided to give the blog a bit of a spring clean this week along with a new logo. The ‘d’ on the left representing Alfie and the ‘D’ on the right representing myself. I’ve also set up a dedicated Facebook page to the blog so please click the link and give it a thumbs up. Thank you.

BBC Radio Manchester interview

On Tuesday 12th May at approx 8.15am, I’ll be doing a ‘live’ interview with Becky Want on BBC Radio Manchester Breakfast Show discussing my recent Action4Alfie social media campaign. I’m not quite sure what to expect as I’ve never done a live radio interview before! Wish me luck!

Well that’s almost 7 weeks isolation completed and we’ll just have to wait and see what Boris announces in regards to lockdown later today.

Stay Home. Stay Safe. Stay Distant.

Kieron

#DuchDad

84 Days Later (part 6)

Breakfast of Champions

It’s Sunday morning, the one day I try to keep as routined as possible to allow myself time to blog my thoughts and clear my head for the new week ahead. A nice breakfast to set me up consists of grapes, sliced peaches and yoghurt topped with granola. Washed down with a nice cup of builders tea! Ahhhh!

In the past, the previous day used to be so pleasurable. The first full day of the weekend and spending quality time with the family. I don’t know about you but now Saturday’s just seem to draaaaaaaggggggg, so much so that during this lockdown it’s now my least favourite day of the week!

Half Time

We’re now approaching the half way point of our self isolation period and I’ve been told on a few occasions this week that life on the outside is slowly getting back to normal. More traffic on the roads??? More people out shopping??? Aside from the idiotic selfless people that had previously ignored all the advice about staying at home, I think we should be asking the question why this week the government chose to announce that we were past the peak of the pandemic??? Are they really trying to encourage a second wave of Coronavirus? Personally, I think this announcement will encourage more people to think we’re over the worst and that it’s now ok to go about as normal with our everyday lives. We still don’t have any clarity on what happens after the 12 week period in regards to protecting the vulnerable like Alfie. Coronavirus isn’t just going to disappear overnight is it? What’s to say that our immune systems aren’t lower than normal after the full 3 months isolation? After all we’ll have had no contact with anyone during that period of time. Are we just to be expected to just return to normal as if nothing has happened? I could go on but we’ll just get into the politics side of things and that’s a subject I’m choosing to ignore for the time being due to it being quite a prominent subject the last couple of weeks.

#HappyBirthdayAlfie

Last week was quite a comedown after the previous few weeks antics. I can only describe this past week as feeling like the day after your wedding day. You put all the time and effort into planning this one special day, the day arrives and before you know it’s gone in a flash! Like a wedding though, we have special memories that have been created and ones that will last forever (unless you’re now divorced!!), not just for us but also for our family and friends. I think probably the reality of all this will only really sink in when it appears next year on my Facebook memories when Alfie’s birthday comes round again! It was quite funny the other day as Alfie was watching James Corden’s Carpool Karaoke on YouTube, his ‘passenger’ was Ed Sheeran. Alfie turned to me and innocently said “Daddy, is he one of your friends too?!!” Erm, no Alfie but just wait whilst I contact his agent, I’ll see what I can do!!

Joe.co.uk

On Monday I was contacted by journalist, Nooruddean Choudry from Joe.co.uk in regards to him doing a feature for their Twitter page about the #HappyBirthdayAlfie campaign. He was such a nice genuine guy and really made me feel at ease during the Skype interview. I spoke to him in regards to the campaign itself, why it’s important for people to still #StayHomeSaveLives and also about Alfie’s condition. It was a 30 minute interview cut down to 3 minutes but I did speak about the positive response Alfie has had to his steroid treatment, the negative side was yet to come…

Steroid treatment

Alfie takes 10mg of prednisolone daily and it’s made such a massive difference to how he goes about his approach to the simple everyday things we all take for granted. Unfortunately this week we also saw the negative side effects of the steroids, they can cause behavioural problems. In the past we used to experience quite a lot of really bad meltdowns in particular before bedtime. We introduced Melatonin to Alfie’s bedtime routine about 3/4 months ago. It helps control his sleep pattern. It makes him fall asleep quicker and less likely to wake up during the night. Unfortunately we missed his bedtime ‘slot’ on Wednesday by about 10 minutes (that’s all it takes) and we experienced one of his meltdowns. Now I know you’re going to think that all kids have meltdowns and they do, some worse so than others but with Alfie he becomes a different animal. Our happy go lucky loving little boy disappears in a flash. It’s almost as though he loses control of himself and it triggers a switch. It took us both an hour and a half to eventually settle him down and get him to sleep. We were both exhausted but then unfortunately we had to go through it all again the next morning for about an hour just because he didn’t want to have a bath. Once he’s calmed down he’s back to his loving little self. During these times you have to just simply ride the storm. When you think back to the times before he took the steroids and couldn’t walk 3 strides without his legs giving way or not being able to climb up one step of the stairs. At this moment in time the positives really do outweigh the negatives with the steroids but during the meltdown moments you really do feel like Dr Victor Frankenstein.

May Goals

So after quite a positive April, I’ve decided to set myself some goals for May. One of those is to try and promote my blog on social media. I really do enjoy writing it and as I’ve said previously it’s my coping mechanism in so many ways. I’ve had so much positive feedback from family and friends so please if you can continue to share it with your followers on social media it would be a great help. Who knows you may even be helping someone else in turn. I’m also going to continue to raise as much Duchenne awareness through the Action4Alfie Facebook and Twitter pages, so CELEBS BEWARE I may be back stalking you in the near future to encourage people to STAY AT HOME and protect the vulnerable.

My final goal is to aim high! The future you see, is the person you will be!

Have a great week! Stay Home, Stay Safe and aim high!

Kieron #DuchDad

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