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Easter 2018

Our Easter tradition over the past 12 years has been the annual Easter egg hunt at Granny and Grandad's house. Things had to be postponed last year as Miss T ended up in hospital on Easter day as a result of getting chicken pox. It is one of the problems associated with being on methotrexate - even common childhood illnesses can take a serious toll on her health - It was almost a week before she was able to come home and was on an acyclovir drip several times throughout the day and night. 

But the year before and every year before that it was a regular occurrence. Photos from our 2015 Easter egg hunt can be found here in the days that Holly dog was with us and used to join in the fun too. 

This year the Easter egg hunt went ahead despite hearing the sad news that my dad had passed away in the early hours of Easter morning. 









Massive thanks to granny and grandad for another fabulous Easter egg hunt! 

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Miss T is 6 years old!


Oh my - how time does fly by. It is so strange to think that when Miss T was born, D was six years old - the age she is now.

And it is times like this that I love the wonder of blogging. We began the blog in 2012 - the year she was born and it seems that the first proper milestone update was at 9 months old but then fairly frequently after that at 10 months, and 13 months and so on. As well as capturing other milestone moments like her teething,  her 1st birthday, getting new shoes when she started walking. It is so lovely to look back on all those memories that would be so much harder to do without the blog.

Of course there are memories of things we wish were different - when she first developed Juvenile Arthritis. How I would do anything to take away her JIA. I pray it won't define her, or limit her and I pray she will overcome it to achieve her dreams in future.

So now she is 6. There was more than one day of celebrations as she had her party with just a few friends pottery painting on one day, then having granny and grandad over the day before her actual birthday and finally the big day itself.



















She helped me make unicorn cupcakes which turned out super. It was the first time we had ever made them. Apparently a group of unicorns is called a 'blessing of unicorns' - what a beautiful term for it.

Little had we realised that just after we made the cupcakes, it was #NationalUnicornDay. Who knew there even was such a day!

So 6 years old. My baby is now 6. I could not have wished for a more amazing daughter. So caring and kind and sensitive and brave and creative and imaginative and strong and super!


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"Look up at the stars and not down at your feet" - Our Snow and Stargazing Wonder-filled adventures


That quote has been made even more famous this week with the loss of Professor Stephen Hawkins. The truth is that I have always loved looking at the stars. Whenever life troubles seem so big an evening outdoors looking up at the greatness and vastness of space seems to make all my problems melt away.

In support of the current on-pack promotion, The Great Oreo Cookie Quest, Oreo have challenged bloggers to share their own wonder-filled adventures with the #OreoCookieQuest hashtag. Our family have always enjoyed a good treasure hunt whether it is looking for eggs at Easter or the educational treasure hunts I used to set up in the years we were homeschooling. We've enjoyed many wonder-filled days out visiting museums, observatories and monuments too.

As the boys have grown older, J now a teenager and D nearly a teen too, it has become increasingly difficult to fill their days with wonder and drag them away from their computer games. But the one thing that we can do together as a family that never ceases to amaze them (and us) is our own stargazing adventures.

We had one such night planned - with telescope and hot chocolate at the ready. Along with Oreos to dip and dunk into our hot chocolate.

But then this happened...

Snow...

Winter often provides some of the clearest nights for stargazing but tonight's adventures were thwarted with snow clouds up above leaving visibility low.

But it made me realise that snow itself is another wonder-filled adventure. How rare it is (we hadn't had a proper snowfall where we live for 6 years!), how pure it is, how beautiful it is. The uniqueness of each snowflake.

Just as we can stargaze into the dark sky at night and spot more and more stars each time we look as our eyes adjust to create this gigantic stunning canvas of beauty in the night sky, as the snow falls flake by flake it also creates a wonderful winterland scene like looking out onto a painting.

Both totally awe-inspiring.

So, after playing in the snow, we used our indoor time warming up whilst doing a Stargazing themed Oreo cookie quest.



We plotted a few simple constellations that we've often seen in the night sky leaving one of the crucial stars out. The kids had to find where the missing star would go and fill in the gap with an Oreo.





Then arty D carried on the fun with some snowy themed pictures incorporating Oreos!


We love stars so much that we even named our cat 'Star'.



If you've never tried stargazing before, I'd thoroughly recommend it. We do have a telescope which has enabled the kids to see Jupiter and some of its moons.

Even without a telescope, the moon's features can be seen really well with a good pair of binoculars.

With the naked eye shooting stars can be seen - especially as certain times of year when there are meteor showers (e.g. August's Perseid's meteor shower). You can also spot the space station orbiting the earth at dawn and dusk at certain times (find out more here).

There are also several apps available that can help you identify the names of planets and stars so when you spot a particularly bright star in the sky, pointing your phone or tablet at it will show you what planet or star it is using one of these apps.

One final tip for stargazing...If at all possible head away from town and into the countryside where there is less light pollution and suddenly as if by magic thousands more stars are visible.

So whether your wonderfilled adventures are in snow or in the stars there is much to be learnt and lots of fun to be had with Oreos.

This post is an entry for BritMums #OreoCookieQuest, sponsored by Oreo. You can find out more about the #OreoCookieQuest here and find out how to take part in The Great Oreo Cookie quest currently featured on promotional packs of Oreos. 
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Total Hip replacement - Quick update for week 6 and week 7 post-op

I scribbled down some notes on 6th March 2018 at the time of my 6 week post-op milestone...

My consultant was happy with everything at the 6 week check. I'd tried my wellies on (with lots of help) for the first time that day and found a short field walk exhausting as I could feel every bit of even slightly uneven ground far more accutely than ever before.

I'm generally still using my stick for outdoors as advised by the physio (although I didn't take it to the muddy field!)

I've discovered that trying to kneel really really hurts. At first I thought it was just that my muscles down the front of my legs hadn't been stretched in that direction for so long but come to think of it, my left leg is agony when I kneel and that could be to do with the leg length being adjusted during the op. Those muscles may never have had to stretch  that much before!

I've been able to lie on my front. The TED stockings have gone - hurrah!!!And I've been given permission to lie on my side (either side) without the slumber pillow as soon as it feels comfortable to do so (as yet it does not so I've been sticking with the slumber pillow between my legs).

The consultant has given me permission to drive as soon as I feel ready to. Again I don't just yet.

The insomnia has returned somewhat which is dissappointing.

Last Friday we ventured to Great Ormond Street for Miss T's appointment. I have to admit it was rather terrifying at times walking on the snow and ice.

This was followed by a difficult train journey home in a packed train because of the snow. Thankfully I got a seat but I was concerned at the station about being pushed over in the crowds. This remains a fear as a fall could still result in dislocation of the hip.

Then the weekend gave us another scare with chest tightness and discomfort with long visits to A&E to rule out pulmonary embolism.

Thankfully after two days of visits and a blood thinning injection into my stomach, xrays and a CT scan all was clear.

Hoping for a less eventful week next week!


Week 7 post-op update - Written on 12th March 2018....

Tomorrow is 7 weeks. I saw the physio today who thought my stick was now more of a hindrance so she's happy for me to go without it outdoors too with the exception of busy places where I could get knocked over or fall eg when travelling on train.

My lovely Auntie has been visiting so yesterday, on Mother's day, we headed to London and went on the Thames Rockets RIB boats. I've been lots before so although they made me sign a disclaimer because of my hip, I was pretty confident I'd be ok. Thankfully I was ok. It's my absolute favourite thing to do in London - it's a real thrill and yet I feel in safe hands and don't feel scared.

I tried a teeny bit of driving around the block today so I think I'm just about there for driving again soon too.

I'm gradually trying to increase the range of movement. It's really tough trying to retrain my brain and my body seems to automatically resist movement beyond a certain point because it knows from before that range of movement wasn't possible. So I'm still reliant on help with socks and shoes. Am trusting that one day I will get there.

13/3/18
I did my first school run alone and without the stick today. It felt very weird and the school run is proving to be a scary experience with kids on scooters rushing past.

I also managed a shower without the shower chair - again that was a bit nerve-wracking with the risk of a slip!

I'm going to pack the raised loo seat away in the next few days, along with the toilet rail and shower seat that can go back to granny as she kindly loaned them to us.

Life is slowly returning to normal!







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Total hip replacement in Younger Patients: Week 5 Post-op update


Once again I've fallen behind on getting my updates up here. Here's week 5.

Written Wednesday 28th February 2018

Yesterday (Tuesday 27th February) was the 5 week milestone after my total hip replacement.

I had my physio session on Monday- she was pleased with my progress although advised to continue with the stick for outdoors even though I'm managing without it indoors. I was limping more without the stick- she thinks that could be because of how long things had been ‘wrong’ with my hip before.

I'm more stable on steps- again managing without the stick when at home.

I feel like gradually a kind of normality and routine to life is happening as I'm rarely having to have a day time rest on the bed and I tried the school run alongside Richard a couple of times.

However all this ‘normality’ is wiping me out. In general if I'm having a relaxed day I don't need that bed rest, but on busy days I find I really do need it.

Sleep has been better since the weekend. I've been getting a big chunk of about 4 hours sleep which is brilliant compared to the hourly waking I had before.

I'm doing my physio exercises twice daily and it's getting quite tough as it takes ages to run through all of them and with a new exercise added in (straight leg raise and hold x 10 secs for 10 reps while lying down) - it is hoped that will strengthen the muscle/ligament that has really been weak over the past 30 years and help me be able to get my leg to a 90 degree angle and eventually beyond.

I generally feel like my leg has the strength for driving but until I can get that angle improved I won't feel happy. So that is my priority this week so that the surgeon will give me the go ahead for driving at the 6 week check next week.

Finished my course if xaralto blood thinners on Monday- hurrah!

The big setback this week has been the snow making it dangerous to venture outside in case of slips and possible dislocation.

This is day 2 of the snow and I'm really pleased for Miss T as its her first experience of proper snow since she was a baby. I just feel annoyed that I can't properly enjoy it with her although I have ventured into the back garden each day onto fresh snowfall as that is less dangerous than when it gets icy.

I'm off all meds now. I was concerned whilst on xarelto that my period would be awful after reading horror stories online with people being hospitalised with blood transfusions etc but thankfully my fears did not materialise. I had one bad day but the rest was ok.

Overall a good week - In someways feeling pleased with progress and in other ways wishing progress was faster.

Bed sore that began on day of op still not healed

scar at 6 weeks - healing well


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Total Hip Replacement surgery: 4 week post op update

Today is the 4 week anniversary of my new hip. So this brings my recovery blogposts up to date - hurrah!


Overall things are going well. I feel like my muscles are strengthening with the physio exercises each day. I made it out the house for a couple of little walks at the weekend and even got to church on Sunday. 

I'm definitely gaining more independence around the house - I'm no longer restricted to using the loo with the height raise fitted but can carefully use the downstairs loo too. 

I can wash up and load the dishwasher. I can pick up most items off the floor most the time by doing a 'keeping operated leg straight out behind me whilst bending the other knee manoeuvre'. 

I'm still limited when it comes to the shower and need help and also for getting things in and out of low cupboards. 

I'm better with meal prep although spending too much time standing up wipes me out and leaves my toes throbbing. My ankles have been very 'clicky' and painful though which i'm hoping is just an adjustment thing and that they will settle down. My left ankle in particular has never been great since my JIA first began but it hasn't been this bad for a long time. Even my knees are playing up when I do my physio excercises and they've always been fine before. I try to get my 2 sessions of more intense physio done in the mornings to get them out the way - the exercises using the bands and ankle weights. And then that leaves two more sets of the initial bed exercises and standing exercises that I still do 4 times per day. 

I wish I could get out for a little walk each day but today it's wet again out there like it was yesterday and I find that I'm really fearful of a slip or fall. That's also the reason I am really fearing the school run too when that time comes as there is so much bustle up there with kids running around like crazy that I fear being knocked over.  

Some days I feel really optimistic and positive whilst other days I just feel bleugh and today happens to be a bleugh day. 


Today I feel nauseous from lack of sleep. I dread the night times and last night was one of those 'looking at the clock every hour' kind of nights. I reckon I managed a couple of hours sleep during the night and then after lying awake for hours afraid to move as I didn't want to disturb Richard as his sleep has been suffering because of me, I  finally managed about 30 mins more this morning once he was awake. 

So I'm feeling so groggy that I can't even face doing my first set of physio exercises this morning but I will do them because I know I have to. 

Granny is back in hospital which is a massive worry for us all - I can see it on Richard's face and the children's faces just how worried they are. I know she will be fine as she's the strongest person I know but  it is the not knowing what is causing the problem that is the worry. 

My dad is also in hospital right now and because he lives further away visiting him is out the question right now for me so that is another frustration. 

Gosh it's all sounding miserable again which I don't think it would have done if I'd written it after a better nights sleep. 

I came off all my pain releif meds yesterday except for paracetamol in the evening. Ive only got 1 more week of xarelto (riveroxaban) blood thinners to take and I've found that by taking it straight after dinner around 6pm rather than 10pm, my legs feel less agitated during the night.  I'm still feeling the heart palpitations when I lie down but the doctor didn't seem to think that was related to xarelto. Either way I will be glad when I no longer have to take that as then I'll stop the evening paracetamol too and see how I am without that. 


Now it's time time to get up and yawn my way through today. 


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Here are a few notes from my 3 week milestone which never made it onto the blog yet...(I ended up sticking with the riveroxaban for now after all)

Day 21 - 3 week update - tues 13th feb. pancake day! Physio Pain in ankle - esp left ankle. Given a stick for outdoors. For better balance - standing taller . Indoors ok without anything. Late evening. Loads of clunking in hip with every step. Dr called re switching from riveroxiban to apixaban- not sure what to do. Day 22 weds 14th Feb Took riveroxaban earlier last night and had better nights sleep.   Also foot on a cushion after checking with physio to relieve heel sore pain.




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