> The Beesley Buzz: 2019

He's done it - 50 Junior Parkruns

Just over a year ago, J (then aged 13) decided to take up running. After running locally, he decided to try Junior Parkrun (2km run every Sunday morning) before later taking on Parkrun (5km each Saturday), and later joining the local athletics club (where he runs for an hour twice a week and is trained on speed, stamina and technique by his wonderful coach).
Granny and grandad came to support J on his final Junior Parkrun.
Junior Parkrun has a rewards system to help keep their runners motivated. They award wristbands when children complete 11 runs, 21 runs and 50 runs.  A little something to recognise the effort and commitment involved.
Moments before the start...
Earlier this year J worked out that he would need to run every Sunday morning to be able to get the final wristband (50 runs) before his birthday - you see, you can run until the day before your 15th birthday. There was a slight panic when we heard they sometimes have to cancel if there was snow and ice (we had a few anxious Sunday mornings in February waiting to check the conditions!) or if there was a thunderstorm (thankfully rare and they all missed us).
Coming to the end of the first (of two) laps.

Well, tomorrow J turns 15. So today was the last opportunity to run a Junior Parkrun. And he did. He completed his 50th run today, and completely smashed his personal best at the same time! In the past he has been able to chase down some very fast runners, and that has helped him get a new PB. But today they weren't there... yet he still took 6 seconds off his previous best time.
Sprint finish
Well done J - we are so proud of you for your commitment and your dedication, as well as your determination to get that new PB.
The UltraMarathon wristband for completing 50 Junior Parkruns.

For those of you interested, here's J's stats:
First run, 3 June 2018   9mins 18sec
Final run (50th), 23 June 2019    7mins, 31sec
Number of finishes (out of 50) where J came first: 26

A big thank you to the Junior Parkrun volunteers who give up their time to make the event such a success.

Trinity's tooth trauma - What do you do when an adult tooth gets knocked out?

This blog has been a place for all Miss T's major milestones from weaning to when she first learnt to crawl,  and ironically a lot of teething posts too (and here). Along with flurries of monthly updates when she was little at 13 months, 14 months, 15 months, 16 months, 17 months and so on. Then when JIA struck when she was nearly 3 years old, this blog became a useful place to document what was happening with that and there are times I've had to re-visit old blogposts to recall when certain things were happening.

So it only feels right to document what happened last Sunday, Father's Day, June 16th 2019.

We were having a lovely afternoon in the park. The sun had come out after a morning of rain and we had met up with some JIA friends for a play. After a couple of hours we saw Miss T heading towards us with blood dripping from her mouth. Armed with tissues we thought it was a cut lip but she was incredibly distressed saying her adult tooth had been knocked out when she fell.

The other kids set to work searching in the woodchip and mud for the tooth whilst we comforted Miss T and called 999 for advice on what to do. Knocking an adult tooth out IS a medical emergency.

The tooth was promptly found by the kids and it was covered in debris. We rinsed it in a cup of water and asked 999 what to do with it as I had heard that you should try to re-insert a knocked out adult tooth.

They said NOT to try to reinsert it and to head to A&E. Please read on for what you SHOULD DO as it seems we were given a catalogue of incorrect advice. I told them I had put the tooth in water- they said it needs to go in milk. There was no access to any milk. So I asked whether it is better to keep it in water or nothing. They said nothing. (The dentist later cringed at this when I told her).

Things went from bad to worse at A&E. Upon arrival (we were now about 30 minutes post-injury and I was conscious that there is a limited time frame to re-insert the tooth) I asked for milk explaining why we needed it. They said there was none.

I told them that is ridiculous and that SOMEWHERE in the hospital there would be some milk. They pointed me towards a drinks trolley in another room so I got the tooth into some milk. They then proceeded to slowly register Miss T with no sense of urgency. Upon going through to the children's A&E section we were told to take a seat and wait. The time now was nearing 45 minutes post injury. I pointed out that we only had a limited time to re-insert the tooth and they said that it wasn't something they would do in A&E anyhow.

At this point, I took matters into my own hands and re-inserted the tooth myself. Miss T did find it distressing but she realised it was something we had to do because no-one else there was going to do it. They said that her screams were disturbing the other patients and could we move to a cubicle. By that point I had pushed the tooth in as best as I could although Miss T could feel it slipping down.

We were advised that there was nothing they could do at A&E and that we needed to phone the emergency dental line...That didn't open until 6pm.

We called our own dentist and tried their emergency number - They could get to the dental practice by 7pm but there was a call out fee and together with the treatment fee of splinting the tooth it cost £500 - they said they were happy to do that but to try the emergency dental line again at 6pm. We tried the emergency line again as by this point it was 6pm - no luck getting through - on hold for 10 minutes. So we contacted our own dentist again and said we would like them to treat Miss T.

They reinserted the tooth properly as I hadn't quite managed to with all the blood in the area and cleaned up her mouth as best they could. It needed a couple of stitches in the gum too. She was given antibiotics and advised to check that her tetanus was up to date.

She's on soft mushy food for a month and needs to rinse with warm salt water and clean gently but well around that tooth brushing downwards around the gum.

She was sent to Kings Hospital yesterday so that they could look at what needs to be done from here on in although she does have a couple more follow ups with our own dental practice - our dentist was amazing!

Kings need to see her 14 days after the original trauma to have the splint removed. We need to watch for signs of infection/pus in which case they would need to remove the nerve / root canal treatment. But there is a tiny chance that the tooth will be able to reattach sufficiently to get nutrients etc to it.

In the longer term it will need replacing with an implant as the way the jaw repairs is to fuse bone to the tooth which means the tooth won't grow like the others and won't be responsive to orthodontic treatment. High risk of infraocclusion. They gave us some corsodyl gel to use 3 times a day at different times to brushing to help keep germs away.

Incredibly Miss T seems to be taking things in her stride despite the distress of the original trauma where she was devastated to have lost an adult tooth.

We are having to be really careful with all activities (mustn't risk it being bumped or knocked again) so no PE, no playtimes outdoors at school etc and she's drinking with a straw. But generally is doing really well!

So what SHOULD have been done:

From what I have found out since from speaking to the dental experts - they say "Pick, lick and stick":

  • Pick the tooth up holding only the crown not the root
  • Lick it clean or VERY GENTLY rinse in water to remove any obvious debris
  • Stick the tooth back in being careful to put it in the right way (ONLY for ADULT TEETH do not try to re-insert baby-teeth). 
If you are able to form a kind of brace using thick foil like milk bottle lid thickness of foil then do so to help hold it in using the surrounding teeth. 

Get EMERGENCY dental treatment for it to be splinted properly. 

In theory all the dentists we have spoken to have said that A&E departments SHOULD know what to do. But in our case they didn't know what to do and refused to help. 

So if it was to ever happen again (we pray it won't!) - I would follow the "pick, lick and stick" advice. It also seems crucial to keep the tooth moist if you are unable to re-insert it immediately - so ideally milk but failing that saliva or saline. 

Since the trauma I've come across a few other web articles which seem to give sensible advice which corresponds with what we've been told by the dentists who knew what they were doing:

* Please note that we are not providing medical advice, but what we have experienced and what we did. This is to maintain a record for our purposes. If you experience the same situation, seek urgent medical advice.

Toothbrush photo from Unsplash - Credit: Photo by Alex on Unsplash

My favourite place - 5 years on

Back in summer 2014, me and Miss T often visited somewhere that I believe is one of my favourite places on the planet - I rarely feel the feeling of peace and tranquillity that I have in that place.

When we visited again at the weekend, I found myself reflecting on how Miss T has grown up. How things have changed and how that summer back in 2014 was our last summer before we had JIA in Miss T's life.


Hold on - a new song by Narrow Skies for #JIA

The extremely talented couple behind Narrow Skies music, Ben and Anita Tatlow, have written an incredible new song to help raise awareness of juvenile arthritis and the UK charity, The JAR Project who are working hard towards finding a cure for JIA.

The song is called Hold On and it so accurately reflects both the courage of children with JIA and all that they go through but is also a story of hope.

These are the lyrics which I have copied below and I have found them to be so poignant and powerful that my eyes well up with tears every time I hear the song.

There is a link to the song below too, but I just wanted to take a few moments to explain why these words and this song are so special.

Ben and Anita didn't receive any specifics when writing the song which is why it is all the more astounding just how perfect the song is.

Firstly reference to "little one" - Trinity was diagnosed with JIA at age 2. It is at around this age that many of the children with poly JIA (5 or more joints affected) and oligoarticular JIA (1-4 joints affected) are diagnosed.

"Your fire will light again" - one of the things we noticed when Trinity was first diagnosed was that not only did JIA rob her of her ability to walk and run and play but her confidence went rapidly downhill for a long while.

She couldn't understand (and was too young at the time to discuss it meaningfully with her) how she had gone from being able to do things to suddenly being unable to.

It really was like her sparkle had faded. This young child who everyone used to comment about how smiley and happy and delightful she was - suddenly had a whole big burden to deal with at such a young age and that was reflected in the change we saw in her demeanor. It has taken years but I've recently noticed a confidence and spark coming back again.

"I see the strength within you, the courage that you hold" - it sure takes a lot of courage to go through injections that you know will make you feel sick and will be painful as it goes in, week after week after week. We're now up to 210 injections of methotrexate, a chemotherapy drug used to suppress the immune system in order to suppress the arthritis.

Throw in blood tests every 2-8 weeks too which don't always go to plan and yes that really is a whole lot of courage that's required.

Its tiring having JIA- the disease itself can cause tiredness, and the medication can too, and the ongoing appointments and therapies and treatments which are not always close to home so can be tiring getting to them. That takes strength to keep going. To keep doing those physio exercises when all you want to do is rest.

"With all the things you learnt along the way" - I always say to Trin that although I would do anything to take away her JIA, it has actually made her a stronger young lady than she even realises right now.

She has adventures ahead of her and this beautiful song reminds us of that and not to ever lose hope.

Hold on - lyrics

Hold on little one, your fire will light again
Hold on little one, your fire will light again

When your glow seems to be fading, we try to fan the flame
To take away these burdens, to shield you from the pain
But Oh, I see deep within
These embers burn brighter than they seem

Hold on little one, your fire will light again
Hold on little one, your fire will light again

I see the strength within you, the courage that you hold
Over mountains, across oceans, adventure waits for you!
Oh, the places you’ll go!
With all the things you learnt along the way

Hold on little one, your fire will light again
Hold on little one, your fire will light again

Linking up with Raisie Bay


WORD day 2019 - World yOung Rheumatic Diseases day

Today is the first ever WORD day - a day of awareness for children and young people living with rheumatic diseases (including Juvenile Idiopathic Arthritis which Miss T has suffered from since the age of 2).

One of the things that I've found myself feeling somewhat angry and upset about is that when I was diagnosed with JIA back in 1987 (or Juvenile Chronic Arthritis as it was called back then), the main thing people would say to me when I told them why I was on crutches was "Arthritis? but I thought only old people got arthritis".

It made it a lonely place to be as a 10 year old with such a lack of understanding and awareness in the world around me.

Fast forward to 2015 and Miss T's diagnosis of JIA. I had truly hoped things would be different in the 3 decades that had elapsed since my own diagnosis. But the main statement we heard time and time again in response to hearing of Miss T's JIA...you guessed it..."But I thought only old people got arthritis!"

That is why the introduction of WORD day is so important. It is not only to help all those suffering day in day out with their condition feel a little less lonely and a little more understood but crucially with greater awareness comes quicker diagnosis and treatment, and receiving prompt treatment can make a huge difference in the longer term outcomes for these children.

In my own case, it was over a year until diagnosis and by then the damage was done resulting in me needing a hip replacement operation. We know Miss T was one of the lucky ones with prompt diagnosis and treatment enabling her to live a much fuller childhood than I had. But JIA still throws its curve balls at us, whether it is the sickness and side-effects that her medication causes, the threat of regular childhood illnesses like chicken pox landing her in hospital, or the ongoing mystery foot issue that no-one seems to be able to explain.

So today we celebrate the bravery of these children, we stand with them to show we care, we shout out to the world that children and young people get rheumatic diseases too!

If you want to show your support, join the #WordDay2019 tweet chat between 6pm and 7pm (GMT) TODAY (18th March 2019) @wordday2019 on twitter.

If you want to find out more about Word day have a read of this brilliant blogpost by Simon Stones.

Juvenile Arthritis Research will also be sharing case studies and stories of children with JIA on twitter throughout the day.

This is the age Miss T was when she got arthritis. 2 years old. Children of all ages can get arthritis and rheumatic diseases. Help spread the WORD.


Chewy oaty banana bars

After making my healthier flapjack recipe, this recipe was supposed to be another variation on healthy flapjacks.

They turned out far more soft and chewy than planned so I don't think I can call them flapjacks really.

 With no refined sugar, they are sweetened with banana and raisins.

250g oats
3 bananas (300g when peeled and mashed)
50g coconut oil (melted)
1 tsp vanilla extract
Half a tsp bicarbonate of soda
30g cocoa powder
100g dried fruit soaked in 80ml boiling water

1. Preheat oven to 180c. Grease and line a baking tin (I used 23cm x 27cm).
2. Mix together the bicarb, cocoa powder and oats.
3. In a separate bowl mash the bananas, add the vanilla extract, coconut oil and the dried fruit which has been soaked for a few minutes in 80ml boiling water (pour it all in including the water).
4. Then mix together the wet and dry ingredients. Press it into the prepared baking tin.
5. Bake in the oven for 25 mins.


Healthier flapjacks

I love to attempt making healthier versions of my favourite foods. Just over a week ago I got a phonecall at midday from Miss T's school...she'd had a bad fall and injured her ankle quite badly.

When I went to collect her from school during her lunch break she was worried about missing out on dessert...which was flapjacks that day.

We took her piece of flapjack home for her to eat at grandads house that afternoon but it made me realise that I never knew how much she loved flapjack.

I decided to make my own but with a few healthy twists...taking out the refined sugars and replacing butter with coconut oil and rapeseed oil.


100g coconut oil
400g oats
95g rapeseed oil
80g dessicated coconut
150g raisins, sultanas or dried mixed fruit
100g honey
86g Apple puree


1) grease and line a baking tray (I used size 27cm x 23cm) and preheat the oven to 180c.
2) In a pan melt together the coconut oil, rapeseed oil, honey and Apple puree. Then add in the oats, dried fruit and dessicated coconut.
3) Mix really well and then press into the baking tray.
4) Bake for 25 minutes at 180c.

When I made this I forgot to add the honey and Apple puree into the oil mixture so I had to add it in after but it still worked out ok.

It made quite a crumbly flapjack so next time I think I'd experiment with more Apple puree, or coconut oil and perhaps without the dessicated coconut because not everyone likes coconut as much as I do.


Christmas 2018

How are we already in February!!! I was determined to get Christmas 2018 written up before January was out but somehow that didn't happen. Better late than never I suppose! 

As someone who usually hugely dislikes Christmas, I actually enjoyed it this year. Probably because we kept things very low key. Having missed booking a Christmas online grocery slot, I didn't even have to do any Christmas food shopping in advance of Christmas. We just made do with the regular food we had and I'd bought a small turkey crown ages ago to pop in the freezer. My own nutloaf was already cooked and sliced and frozen too all ready for Christmas day.
In the run up to Christmas, Miss T had loved opening the gorgeous little fabric bags on her Evie Michelle advent calendar with a pretty bow in each pocket.

These beautiful bows really were the highlight of our advent in the run up to Christmas! Thank you so much Evie Michelle!!!

D read us the story of "Santa Goes on Strike" - you can read our review here and I can see this becoming an annual tradition to read this book each year.
One of the things I do enjoy about Christmas is making our own family traditions. For example, the kids know that no-one is allowed downstairs on Christmas morning until we've opened stockings upstairs first. So they all pile into our bedroom and open their stockings on Christmas morning. It gives me a few minutes longer in bed too so that's a bonus.

Most years we try to remember to take a family photo of us all. It is quite possibly the only day of the year that we manage to get a photo with us all in it!

We do a bit of present opening in the morning and then more after lunch to spread it out throughout the day.

Daddy cooked amazing yorkshire puds this year...

I like to attempt a homemade dessert when there are no guests to worry about. (Things always go wrong when I try to cook for guests!)

This year Real Handful provided us with the ingredients and recipe for the perfect Christmas dessert. We love what these guys do, their snacking philosophy and you can sense the passion of the family behind these fab snacks. And kindness too - I remember them sending me some get well snacks whilst I was recovering from my hip replacement surgery - How kind is that! 
We actually decided to make two of these desserts - one to share and a mini version too. They are Chocolate dessert bombs made with pannetone, icecream, real handful blood orange burst and chocolate drizzled over them.
Miss T was overwhelmed with some of her Christmas presents - this made us all cry when we saw her cry with happiness.

And then it was all over for another year.