Whacky Wednesday ~ It Could Only Be Lent!

Another whacky day of driving hither and thither.  Once we had dropped Ben off at college the three of us drove to Whalley Abbey for a look around and to also visit the Autisan cafe that had been featured on a recent episode of Songs of Praise.

  Whalley Abbey was originally a Cistercian Monastery and is now a retreat centre belonging to the Church of England Diocese of Blackburn.  The cafe itself is autism friendly so no loud music and glaring lights and some of the staff identify as being on the autism spectrum.  It was good to support a worthy cause that is almost on our doorstep.  We made it home in time for me to have a well deserved lie down before heading out the door to collect Ben and drive to the hospital for a diabetic appoinment.

 Hot chocolate at the Autisan cafe.

 A replica of the Cistercian Monastery

 Beautiful Tapestries

 Pip's photo of me!

Now that Ben is over sixteen he no longer attends the paediatric clinic and this was our first time at the transition clinic on another part of the hospital site.  The building itself worked well for Ben as it didn't shout at him, this is a hospital!  Even though he has been attending since he was four and cannot remember ever not having diabetes, over the last few years he has found it increasingly stressful attending the clinic sessions and so the appointments have always been met with dread.  Unfortunately the appointment itself was not straightforward :-(

 Benedict's blood sugars have once again been all over the place resulting in a lot of hypos, either at college or late in the evening.  The team want him to try a Flash Libre CGM (Continuous Glucose Monitor) which he isn't to keen on as it will require another piece of kit to carry around.  However it will give us much needed information regarding his blood sugar levels throughout a 24 hour period and providing he is stable it will also reduce finger prick testing on his good days. Thankfully we did get to catch up with the dietician and offered some useful advice in the interim period. Fingers crossed things should hopefully improve :-)

Milestones

Two weeks ago Benedict attended his very last appointment in the paediatric diabetes clinic.  As from now on he will be attending the diabetes hub in another part of the hospital.  We haven't been cast adrift without any support however, as his paediatric consultant and specialist nurse are still involved in his care until he is nineteen.  To mark the occasion, he kindly endured a silly selfie moment in the chidren's ward corridor, right in front of 'The Weaver' painting that featured in our very first December Photo Project many moons ago!

The next milestone involves a haircut and a city break in Edinburgh!  As I write Pip is attending her first ever trip away with Guides.  I dropped her off at the station for 6pm and will collect her around 5pm on Sunday.  On the way home Dave and I had a quiet meal in one of the local eateries nearby and Ben thoroughly enjoyed his curry for one complete with onion bahjis and an alcohol free beer!

 Pip has been desperate for short hair and waited patiently for her hair appointment which was on Wednesday.  Lydia did a great job and not only does she suit it, her hair is much more manageable :-)

These photos were taken in the Salon whilst Lydia was also taking some photos to add to the Salon's photo gallery on social media.  She did ask my permission to take the photos and to share them.  

 All packed and ready to go!

Whacky

On Saturday we had glorious sunshine, so once we had dropped off Ben at Mill Hoppers, we headed across the road to the garden centre cafe:

However on Sunday when I went to meet Ros, my long standing friend and faithful blog reader the weather was doing this:

It was cold and grey and the cafe was crowded so we sat outside and after an hour of chatting, found a space in the smaller of the two tea rooms.  Cue another decaf soya latte to warm up :-)

The weather has not been the only thing that has been whacky 😜. Benedict's blood sugars have been all over the place and last night was my third in the row of being woken by the sensor.  He was running low yet again :-(. 

As a result of the broken nights and several weeks of Sara worry, extra driving, appointments and other stresses I am trying to stave off a crash in my health.  It is 6:30pm and I am already tucked up in bed and typing this from my phone.  

We have the diabetes specialist nurse visiting on Friday whereby I hope we can make the necessary adjustments to stabilise his condition.  If not I will be needed matchsticks to keep my eyes open 😁

Thankful Thursday

Thankful for blue skies and sunshine today

Thankful that Ben is wearing a CGM (continuous glucose monitor).  For the past month his diabetic readings have been all over the place, culminating in several consecutive days of multiple hypos.  Ben's new pump has a function whereby it will automatically shut down, if the sensor detects that he is running seriously low.  Needless to say he has been "alarming" all day!!  The worst bit was when I went to check on him before retiring last night, only to be greeted with a piercing alarm and the following on screen data, " I have diabetes, this is a medical emergency, call for assistance!"  At least I now know that should he ever be unconscious whilst simultaneously wearing the pump and the sensor, that all in theory should be well ;-) 

Thankful for the clothing bargains found in the shops today.  I cannot see the sense in window shopping and I only buy what I need, but the recent surge in temperatures was just the nudge I needed and some long overdue new tops were bought this morning.

Thankful that Uncle Bry called round and stopped for tea.  He is very generous and whenever I see him, he has usually bought some treats for us to share.  We had raspberries in our post lunch smoothie and strawberries with yogurt for our after dinner dessert.

Thankful that both kids are competent in the kitchen.  Benedict made a yummy vegetable and lentil lasagne for our lunch on Monday and moussaka for our tea.

Thankful for Poppy she never fails to make me smile. 

Thankful for some recently purchased active wrist splints.  I have had to use wrist splints in the past, but they had a steel rod insert and therefore doing anything with your hands was virtually impossible.  Knitting and crochet are my sanity savers, but over the past few weeks the pain in my hands and wrists has become quite wearying.  In addition to the fibromyalgia I also have joint hypermobility syndrome.  JHS is where the joints are super flexible and can work beyond the normal range of movement.  Some folk can have this condition and no symptoms.  Some of us have chronic pain and flare ups and in the worst cases the joint itself has dislocated.  Essentially the tendons and fibres surrounding the joint are working beyond their capacity in attempt to maintain joint stability, and as a result pain ensues. 

These new splints have enabled me to keep up with the crafting as well as moderating joint movement, a win-win situation ;-)

Thankful that Sara is making good post partum progress and that Oliver is such a chilled out baby.  She is well rested thanks to his sleeping for a good stretch at night, long may it continue!

Some pictures to share:

 Ben's yummy vegetable and lentil lasagne.

 Kathryn on Easter Sunday having fun with snap chat selfies with Ben!

 Oliver was one month old on Sunday and I got to have Grandma cuddles yesterday.  Love his hair :-)

What are you thankful for today?

Totally Bonkers!

What a night!  Dave has a chest infection and an MS relapse so antibiotics and steroids have been prescribed.  Ben is on his fourth hypo and I have had an allergic reaction to eggs again!

However,  we have had fantastic support from the on call GP surgery and a dear friend offered to drive over to the on call centre and collect the medicines.  Earlier in the evening this same friend felt a strong urge to pray for us, little did he know at that time what was going on at this end!  God is good :-)

Off to my bed, with the hopes of a not too disturbed night x 

Fun Friday

We had a very unusual Friday full of surprises and fun. 

 First up I had an Instagram message from a blogging friend who happened to be in the area.  We met at a lovely tea room in Beetham, not far from the garden centre of our first meeting!

 Beautiful Celtic Cross.

A cottage that was festooned with foliage and flowers of all shapes and sizes.

 I would have loved to look inside the church but sadly it was closed.

 Outside the tea rooms.

 Inside the tea rooms view one ...

... and two.

 Having fun with the selfie mode on the flip screen, Gerry and Me :-)  Those tearooms are well worth a visit and they offer an excellent gluten free range. Due to its popularity it is advisable to book first!

The blue skies soon gave way to a steady stream of rain and in a last minute decision we hopped in the car and visited my mum for her birthday.  Tesco saved the day regarding the food and we were able to tuck into a decent selection of gluten free fayre. 

A lovely mum, nanna and great-nanna x 

Our third stop was a visit to Kathryn and Mary Grace for tea.  It was good to see them both but the visit was marred slightly by Benedict's blood sugars suddenly becoming quite unstable. As a result we left in haste and I was glad that we did because he had a horrendous hypo attack in the car and was quite unwell.  It really was a relief to be home. 

  Jorgen, a mighty eating machine bones, dog food, cuddly toys and wallpaper!  In short a tiny tearaway :-)  Good job, Kath and Mary love him!

The Ikea Effect

On Friday we travelled to the Ikea store at Warrington, Cheshire.  Our main reason for the trip was to sort out much needed storage for the front room.  The trip which should have taken just over an hour took in excess of two hours, traffic jams and road works were the order of the day :-)  We love the Ikea store most particularly the Swedish ability to shoe horn massive amounts of storage in the smallest of spaces.  What we find difficult is the one way system around the store which is exhausting for someone like me who lives with an invisible chronic illness.  At one point those comfy beds all lined in a row were incredibly inviting!  Needless to say coffee, analgesics and anti-inflammatories have been my main stay since the weekend but the pain and exhaustion have been worth it :-)

 A pip juice for a Pip :-)

 A paper mobile.

 Perler bead fun.

 A mine craft creeper in the making.

 A wooden grid.

 Hiding.

 A cheeky face.

 Working on the doors.

 A happy helper.

 All done!  Well almost :-)  There are two doors still needing to be finished but we ran out of steam!  The average bedtime for the adults in the house has been midnight at the earliest ;-)  I had hoped for an early night but we are currently on diabetes watch.  Benedict has encountered a pump problem and so we are back on emergency injections until a new pump can be dispatched and so it is a two hourly check and further injections if needed throughout the night. 

Random

I have been unwell these past few weeks but I have remembered to take photos, so I thought I'd dump them here and give a brief explanation where necessary!

 Saint Catherine Laboure is our Little Flowers saint of the month.  The above is Pip's notebook page and on Monday of this week her craft was a foil replica of the Miraculous Medal.

 During a particularly bad week whereupon the kids fought like cat and dog, we were granted a reprieve in the sibling squabbles and spent a peaceful afternoon at The Midland Hotel for tea and biscuits.  Our usual spot in the main foyer was taken so we made our way to the Rotunda Bar instead.  The area is reminiscent of the 1950's, even the tea pots are bright red!  The mural on the wall was originally painted in time for the hotel's official unveiling in 1933, however since the plaster work had not sufficiently dried the paintwork crumbled and flaked as the years went by.  Two local artists were commissioned to restore the mural in time for the hotel's second unveiling in 2008.  If you want to know more about the history of the place then you can read about The Midland here

 I first came across this book whilst waiting in the audiology clinic with Pip.  It was given rave reviews in the national deaf society magazine so imagine my joy upon finding it on the shelf in our local library!  The author herself has a hearing impairment and some of the characters and experiences chronicled in the book are an account of her childhood.  El Deafo was her alter ego and by creating the super hero she was able to work with and accept her deafness and subsequent difficulties in daily life.  The book is set out in comic book style and outlines  the difficulties faced by those within the deaf community, it appeals to both adults and children alike. 

 

 We spent a lovely morning with Dave's Aunty Judith.  She has a whacky sense of humour which was just what we needed, having been told earlier by a not-so-friendly neurologist that Dave was not eligible for any MS treatment.  In his opinion folks with MS have a fifteen year shelf life post diagnosis after which its a case of shut up and go away!  Thankfully our regular neurologist is a man of woolly pullovers, compassion and a penchant for recycling :-)  He too is limited by way of helping as a result of the NICE guidelines for MS but at least you feel that he listens and cares.

 One Sunday after mass we made a trip to Barton Grange and bought a planter of flowers and a butterfly to place on Aunty Maureen's grave.  It was the first time that the children had visited.  Benedict was subdued and Pip in between crying hugged the ground and wanted to leave her teddy for Aunty Mo.  She is buried in a beautiful village church yard and her place over looks the hills beyond.

 Last week we managed a trip to Holker Hall to meet Dave's mum and dad.  The kids spent the afternoon up and down on the scooters and in the adventure play area.  It is quite expensive to visit the house and gardens but we did decide that next time the gardens really would be well worth a visit.  Dave's dad is famous for telling a yarn interspersed with an old joke or two, the kids have as much fun watching him trying to keep a straight face in the process!

 Last Saturday we had our usual make and cake gathering and I had offered to make the refreshments one of which was this paleo friendly strawberry cake.  The cake itself is made from almonds, eggs, coconut sugar and butter.  The cream topping is in fact whipped coconut cream!  Even if i say so myself it was a lovely light cake :-)

 Since the beginning of this week we have been chasing very unpredictable blood sugar readings.  On Monday lunch time Benedict encountered a very severe hypo with no warning, he started to fit and began to lose consciousness.  We weren't with him at the time but Shein managed to bring him round and stabilise his blood sugars.  Thankfully I had a spare sensor which has enabled me to track his blood sugar readings even when he is sleeping.  As you can see by midnight on the Monday his bloods were crashing so it was a case of pump suspension and me on duty until 2am.  It's been a long while since I have done a middle of the night stint and I had forgotten how awful the night shift can be.

My bed is currently topped with items ready to be packed as we are spending the week not far from Uncle Mike in Gloucestershire.  Dave's brother Uncle Andy is hoping to stop with us for a few days and it will be lovely to spend time with them both.  We even have wi-fi in the cottage, so with a bit of luck I'll be able to update here throughout the course of the week :-)

Thanks for reading, San xx

An Up and Down Week

Up:

I completed my second swim session and spent most of it blowing bubbles under water and gliding!  It was quite a revelation to realise that, blowing out did not equate to an ingress of water in lungs and potential drowning :-)

Benedict had two friends for tea this week, Ollie on Tuesday and Roland on Wednesday.

Benedict has worked on maths problems this week.

Our Sonlight  curriculum arrived this week and Benedict has been busy reading one of the set books, of which there are many!  He is a happy boy :-)  I also escaped an import duty and for that I am eternally grateful.

We attended our Thursday Home Ed group and the kids had a great time, taking apart old machinery and building a den and fire pit in the woods.

Down:

Benedict attended diabetic clinic on Thursday morning and his blood averages are back up to 9.3mmol/l which is 78% and therefore way too high.  Overnight basals have been increased and he will be retested in a month.  He is currently experiencing a growth spurt and this has wreaked havoc on blood sugar control.

Dave was feeling unwell on the car journey from the clinic to the home ed group and so a motorway service stop was the order of the day and bang went the budget:

  

I have been in constant pain for weeks now and it is very wearying.  In addition I also had a really bad head this afternoon and crashed in bed for a few hours.  Dave was a stalwart and not only collected Pip from school but managed to make the tea with the help of the kids.

The school is having a Roald Dahl appreciation day I wonder if the new head will be going as this character?

 

Roasted Chick Peas :: Visitors :: Retinal Scan

I saw this recipe on Frugal Queen 

Really simple and tasty roasted chick peas ~ drain and rinse a can of chick peas, place in a bowl and add a glug of olive oil, a good helping of black pepper, a sprinkling of sea salt and 1/2 teaspoon of medium strength curry powder.  Great as an addition to a salad meal but these would make an alternative healthy snack option to crisps.

Kathryn and Mary Grace visited for the day and as always their visit was a welcome change from the usual house related chores:

 Get ready now ...

... and blow!

Benedict overcame his nerves and went for his retinal scan today.  He is very wary of new procedures and quite rightly so, since he has had all manner of unwelcome tests as a result of the diabetes.  This test will now be performed yearly so that any changes in his eyes can be identified and acted upon:

 "Mum!  Not snapping again!"

 He did a great job keeping still, let's hope that the results are good.  I think they should be since his bloods although not always within target range have been reasonably stable.