A Birthday Post

 " Hey Mum just think in four years time you'll be sixty and to think you don't look a day over one hundred!!" 😂😂😂. Little Miss PJ AKA Pip certainly has an epic sense of humour!

My birthday was on Thursday so I'm a little late in posting but the small things we did that day are still taking its toll two days later, of the joys of post exertion malaise 🤪

Since there was no chance we were going to make it to Holy Island for my birthday, Dave brought the island to me ❤️. He arranged for a parcel to be delivered containing our favourite coffee from the island and the newly written, 'A Taste of Holy Island' cookbook, written by Victoria Mundy.  We had the pilgrims coffee for breakfast and from the book I made the St Cuthbert's Cake - we first tasted that cake on our visit to the Island last year and my home made version did not disappoint. Victoria co-owns the coffee house and roastery with her husband Andy and you can learn more of what they do at their website found here Pilgrims Coffee

For lunch we visited Booths Shop and Cafe and Pip very kindly pushed me in the wheelchair, this meant I was well enough to enjoy the meal and also be involved in purchasing items for the cake.  Having said that being upright does me no favours and so towards the end of our cafe stay, I put my legs up on the chair next to me to stem the blood pooling in my legs and feet.

By the time we arrived home I was shattered but five minutes later some friends popped by and then there was a chat with our daughter Sr Emma, (she always rings on mine and Dave's birthdays) and a quick Whats App video call with mum.  My brain was well and truly frazzled at that point, but cakes don't make themselves so into the kitchen it was, and despite crazy heart rates and adrenaline dumps it was worth it 😊

I was also blessed with a cornishware blue and cream mug from Dave, flowers from Ben and two other friends, the country living magazine from Pip, a handmade phone case holder with cross body strap, some natural scented body spray and from my long standing friend Ros (who often pops by to read) a beautiful lavender and pettigrain candle, sea weed face mask and some delicious fig and vanilla, rooibos tea.

Yesterday and today have been rest days, with doing as little as possible but I had a lovely surprise in the post from my dear friend Eva, thank you Eva for such a beautiful and thoughtful gift ❤️

Ben's flowers are in the middle, with friend's flowers either side.

Close up of the bouquet.

Eva's lovely gift ❤️. The poppy's will work well in the front garden and I'm going to have fun adding some flowers in honour of Our Lady in that space too 😊

One birthday down and one to go and this time it's the big Two-Zero!

DPP Day Twenty Three ~ Thirteen Today

 Yesterday was a really challenging day and Pip was anxious that some of the birthday plans would have to change but that was not the case!  A real answer to prayer ❤️.  She had a short period in the afternoon when she was struggling to remain upright but that was just at the end of The Harry Potter Escape Room Game and then it was time to watch the film, "A Boy Called Christmas". Would definitely recommend watching it if you get the chance 😊

We also had some other rather unusual answers to prayer.  Our GP follow up this morning highlighted some abnormal blood test results which necessitate a referral to a paediatric endocrinologist.  We seem to be collecting consultants and assorted conditions at the moment and as much as I would rather this wasn't the case, it does at least explain why other certain health issues have been happening.  In addition Pip's cardiologist rang to enquire how things were progressing with the drug change and I was able to explain that things have not been great at all.  As a result we agreed to trial one dose of the ivabradine first thing followed by propanalol for the remainder of the day.  He is also going to speak to her paediatrician and request IV Saline once a week as this makes a significant difference to many PoTs patients.  With all of these medical issues I really felt as if God was saying, 'I've got your back, I know it's hard but things will come good.'

Here are the photos from today:

Super happy to be thirteen ❤️

Not quite x marks the spot as Pip was born in the dining room in the old house!  However we were in the dining room and next to the table where she was born 😊. Normally we try to have a photo at her time of birth 8:39am but we are all exhausted so the photos was taken an hour late.

Pip love, loves football and her favourite team is Liverpool.  She was made up with scarf that we had bought her and her play therapist/counsellor gifted her a Liverpool shirt which she is going to frame and put on her bedroom wall.

As usual Pip's best friend Beth came to spend the day with us and both girls had a really lovely time:

Enjoying a lunch of sausage baps and vegetable sticks.

Working through the clues.

Me helping out as by this time Pip was definitely feeling off.

A rather unwell Pip glad to be sitting down with her legs elevated.  The girls are holding their prize, another dog themed Christmas decoration - although Beth has told me that she keep hers up all through the year ❤️

Making origami stars.

As per tradition they both get to blow out the candles ❤️

Low carb chocolate, caramel brownie birthday cake.  It's the first time I've made it and it was a real hit.

 A final end of day treat hanging out with her school friend Anna from InterHigh.  They are both Minecraft gaming fans and Anna had designed a birthday world for Pip complete with balloons, games, food and a spa!  They video/audio chat on discord as their virtual characters work on building a project.

I'm so glad that we got to make some special memories today it has really warmed my heart and I now feel that I can breathe easy for the time being.

Tales From The Infirmary

 Well I guess it was bound to happen sooner or later and that one or two of us would succumb to a virus :-(  Thankfully it is not Covid as both Pip and I did lateral flow tests and they were negative.  Pip has been hardest hit and sadly that is because she struggles to wear a mask- every time she has tried wearing one since the PoTS kicked off she has keeled over.  I think we'll look in to either getting her a face shield or one of the well reputed Cambridge masks.

  Last week for various reasons we needed to be out and about and I reckon she picked up the germs at some point during that time with either the lift in M&S or a rest room being a hot bed for a virus.  In addition to her having a greater viral overload she seems to be experiencing a PoTS crash with worsened heart rate, nausea, dizziness and feeling faint.  I'm very grateful that we have an emergency supply of cyclizine which is an anti nausea and dizziness medication and a quick chat with our on call GP and a dose was finally administered at 3:30pm.  Two hours later she was able to finish her electrolyte drink and eat half a crumpet.  She's been asleep since 6pm, which is much needed as she barely slept a wink last night due to sore throat and congestion.  I think we are however slowly turning a corner and Poppy is an excellent head nurse, keeping her watchful eye on the proceedings :-)

All smiles yesterday before the congestion and PoTS symptoms reared their head.

The camp bed fits quite nicely under the window in the dining room, I slept here and Pip slept …

…here!

Definitely not camera ready this morning!  This was before the dizziness and nausea really kicked in.  As I write (10:00pm) Pip is currently eating a toasted crumpet and drinking tea so that four hour nap has done her good. Goodness knows what time we will finally retire for the night though!! 

Despite the sickness over the weekend, we did manage to have some fun moments last week:

On Saturday our dear friends from our time in Crewe (1988-1992) came to visit. The last time we met was two years ago, little did the world know what was just around the corner.

On Wednesday we made a visit to our local large retail outlet as I was quite literally desperate for winter clothing, good old M&S did not disappoint, phew!  Afterwards we took Pip out for lunch at Nandos followed by an afternoon coffee treat in the M&S cafe, whereby Dave was treated to the first sale of the season of Christmas Cake Coffee :-)

Christmas Cake Coffee.

Thursday required a trip to Wigan which is an hour's drive away in order for Dave's Luggie to be serviced.  The last time we were here was, yep just before the pandemic so I hadn't even had chance to use their loyalty card and as a result one of the drinks was free!  

Pip's free Mocha :-)

We had lunch outside next to one of the chalet style serving booths and we enjoyed our lunch of sautéed potatoes, bacon bits and cheese sauce.

Dave kept disappearing and it was only once we were home I realised he was taking various Christmas themed shots to add to the family Christmas calendar.  Gone are the days where we could get the kids to do cute, funny poses though, ah well!

I'm trying to keep up with everyone's posts now that I've almost finished my second round of Doula training.  I'm part of the Lancaster/Morecambe Doula hub which is brill as it's an area I'm very familiar with but also I'll be working with my Red Tent Doula colleague and friend, Jo.

Hope life is treating you kindly xx 

 

  

Long Time No Blog

 I hadn't intended to take such a long break and the bigger the gap the harder it felt to pop back, but a kind reader left a comment on my last post and it spurred me into action.

Late last year Pip was diagnosed with significant and widespread joint hypermobility which causes pain and partial dislocations in several of her joints.  In addition she was complaining of constant dizziness and nausea and then the collapses began occurring and there was a query regarding a Pots diagnosis.

One particular collapse in the middle of May led to yet another hospital admission but in order to transfer her to a trolley the team used a Pat slide and in so doing her right shoulder partially dislocated and when she eventually came too she was screaming in pain.  As a result this involved a two week stay in hospital to allow the shoulder to heal but we also had the added complication that every time she tried to sit up she lost consciousness.  Finally she stabilised enough for her to be allowed home but within that first week home she collapsed three times and the following week her left elbow partially dislocated!  By now we were veterans in pain and collapsing management and thankfully kept her out of hospital!

Pip's consultant is really lovely and knowledgeable and in order to ascertain what is going on he ordered a 7 day ambulatory ECG to track her heart rate during this time.  When we returned to clinical investigations on Wednesday to have a 24 hr blood pressure monitored fitted, she lost consciousness whilst sitting down.  The team also got their ECG machine on her and her heart rate was 127-156 beats per minute (a normal heart range is between 75-90), her blood pressure shot up and then plummeted as did her oxygen levels - in short she was in a bit of a mess.  She was duly taken to the children's ward where the nurses remembered her from last time and after five hours she was allowed home.

The following morning I took some chocolates for the staff on the investigation unit and that is when they sat me down and explained that her heart runs at 127-156 bpm 24/7 even when she is sleeping which is abnormal and therefore the Pots diagnosis isn't looking as likely and there is now a concern that there is something physiologically wrong with her heart. Her case was marked as urgent and the cardiologist on that unit turned his report around in half a day.  We are now on a waiting game for the next steps and understandably she is frustrated that she cannot go out on her own or play football at the park. Her consultant had already made a referral to the cardiologist attached to Alder Hey Children's Hospital in Liverpool -they visit our local hospital once a month so hopefully we won't have a long wait.  

Thanks for reading, I think we are all caught up and hopefully now that Pip is in her last week at Inter High I might manage to pop in this space more frequently!  I'll leave you with two recent photos from Pip's yearly Midsummer Fairy Day with Beth, they had enormous fun following a Harry Potter Scavenger Hunt courtesy of an ETSY download, it was well worth the £5.00 :-) 

Loss :: Birthday :: Christmas

Exactly one week ago today (22nd December) my Dad in law passed away peacefully at home with his family around him.  Poor Dad has spent most of his adult years suffering with one major ailment and then over the last few years other problems had arisen.  These past few months had been particularly difficult and around six weeks ago I mentioned to Mum that Dad seemed to have lost the will to live.  Despite my comment though, no one had expected the end to come so quickly for in a matter of days he deteriorated very rapidly.  As you can imagine the past few days have been a bit of a blur but we are all working together adding our own thoughts and helping Mum to plan a funeral that reflects Dad's character and interests.

Dear Dad, May you rest in peace and rise in glory xx 

Birthday

On Monday 23rd December Pip turned eleven years old.  We managed our usual birthday photo at 8:38 am followed by a quiz whereby Pip had to solve a riddle to earn part two of her present.  I had fun composing the riddle in the previous week and had hoped to organise a scavenger hunt but that wasn't meant to be:

A Birthday Riddle

It doesn't matter if its left or right

and Cristiano is the dude in the frame.

With no hands allowed and a clever hat trick

It's skill that's the name of the game.

You need to watch your step

as I'm more lost than rather found,

I might be a bit of a light weight

but I have no issues spinning around!

What am I?

After some pondering she worked it out ... a much needed football since the previous one had aquired a hole!  We also bought her a whittling knife and flint and steel which were put to good use later in the day.  As per tradition Beth arrived late morning and as an extra treat we 'borrowed' her for slightly longer, so she stopped for tea followed by cake and watching " Nativity 3."  Pip's birthday provided a welcome relief from the previous 24 hours and was definitely sunshine on a grey day.

 Finding the flint and steel.

 My goodness I don't have bags under my eyes but suitcases!!  In my defence we did not get home from being with family until 11pm and I finally fell into bed at 1:00am and up again at 8:00am ;-)

 Cheers!

 After lunch bowling session.

 Using the flint and steel to burn last year's Christmas tree branches in Ben's fire pit!

Beth whittling a wand for Pip and Pip stripping the branches for extra kindling.

 Toasting marshmallows and all the best folk wear ...

 ... sunglasses when the sun goes down :-)

 Eleven candles on two cakes, ready now, one, two, three and ...

... blow! 

 Happy Birthday dear gal and cheers to a precious friendship.

"Friends are like stars in the sky, you might not always see them but you know that they are there."

Christmas Day

We managed to attend mass on Christmas morning, followed by our Christmas dinner and opening of presents.  It was a fairly peaceful and restful day which was sorely needed.  I haven't fully recovered from the virus that I had two weeks ago and once again I am battling with a sore throat and swollen glands, always a weak point.

 Building with Christmas Lego.

 Cashew nut roast and assorted vegetables.

 Playing the pudding ping pong game :-)

The tree and Ben playing his battlefront game on the play station; he saved his Christmas money from last year and added it to birthday money and bought this in September.  He has a lot of fun playing online with Tom in Grange, it is quite strange hearing Tom's voice through the television :-)

Hope you are having a blessed Christmastide xx