Monday, April 21, 2014

Monday Meanderings...

It's been a beautifully sunny day here in Devon.  It started off a little dull and I was unsure as to what the weather would develop into, but by the afternoon the skies were blue and the warm stuff was basking our faces once more.


Unfortunately, my day didn't start off too well.

I had been up a few times in the night with sickness and generally feeling yuck.  I developed a migraine and I'm positive I had a couple of small people drilling and hammering in my head for a while.  Oh the pain!  I tried so desperately to sleep as tiredness makes my symptoms so much worse, but it was a struggle - not aided by the youngest family member deciding to cry and cry and cry - why I don't know, she usually sleeps through the night.

She eventually settled.

I lay and closed my eyes, unable to sleep but the darkness and quiet eased my suffering.

My morning routine went out the window.  Fortunately Lee was off work so he picked up my slack.  He also repaired guttering and sorted out the bins - he's good like that.

I really really wanted to be well enough to go and visit Chelsea in hospital.  Lee offered to go alone with a couple of the children but I so wanted to see her myself.  We had promised her a walk to the hospital cafe if she was up to it and not needed by the staff.  I know it sounds such a silly thing to most, but it is a big thing for Chelsea who has not been able to leave the ward.  I wanted to see her face as she took a sip of a hot-chocolate and watch her savour whatever food she chose to feast upon.  I wanted to see her eat.  Not just eat, but to enjoy food as she always did pre-hospital adventure.

So determined to be there, I slept.

I slept until just after 11am and when I woke I felt a little better - not totally better, but improved.

We set off for the hospital, Tiegan and Taisia in tow, packed with sandwiches, fruit, and yoghurt for Chelsea to snack on at leisure.   It's also a back up plan for the times when her meals get forgotten.  Twice she has had to remind staff that she hasn't had her dinner.  Once the lady in the next bed was missed, and once the lady opposite was forgotten.  Really?  Goodness, there are only 5 people in her section of the ward.  The staff keep forgetting to weigh her daily (due to extreme weight loss), and they have even forgotten her medication - she is constantly having to ask, bother and demand!

On arrival, Chelsea was looking at a pile of books that the oh so wonderful Luisa Plaja took in to her last night.  Chelsea has known Luisa for a few years now and thinks very highly of her.  As ever, Luisa has been very kind and thoughtful, it really brightened up Chelsea's stay.

We did make it down to the cafe.  It wasn't long since lunch time for Chelsea so she wasn't too hungry but she did manage to ingest most of a toasted sandwich and all of a hot choc.  Taisia managed custard (she did have apple crumble with it but preferred just the custard), to finish off Chelsea's sandwich and eat half of my chocolate cake - I think she only goes to the hospital for the food and drink bless her, at least it is nice unlike what much is given to the patients.  It helps to have a cuppa or a cake when you are waiting around.

Chelsea's heart rate at rest is 108 - still too high, but a lot lower than it was (it was around 140-150).  They are trying to find the cause but are baffled. She had a heart scan that appeared to show nothing but as the heart was beating so fast it apparently caused blurriness so it isn't all that clear.  Her temperature is normal now so that's wonderful.  Other than that, there is nothing to report.  They haven't done any more blood tests as yet and many of the consultants have been on their Easter break.  Someone will be talking to Chelsea tomorrow and getting her up to speed with any news.

We came home and I promptly fell asleep again - as did Amara.  When I awoke I discovered that everyone else had been busy.

The gang started to build a pond.

This was a job that has been on the must do list for many many months.  We had gotten all of the necessary bits and pieces, but finding the time that coincided with decent weather and dry ground was impossible.  Finally yesterday was the day and boy oh boy were the ducks ever so grateful...

It's not fully completed yet, but it is almost filled with water so the ducks are very happy.

Up until now they have had an old water tank to splash in although they were often seen to be ducking themselves in the water bowls instead.  The tank wasn't really big enough for a good ol' swim about so they think they are in heaven now.  I'm so glad we have been able to offer the pond to them, it will really enrich their days.

In between pond building work, there was a lot of tree climbing...



and bird watching...

Tomorrow I am having a cleaning morning, trying to get on top of all the jobs that have been rather neglected since the to-ing and fro-ing from hospital.  Then hospital visiting followed by a first dance class for Taisia - she is sooooo excited!

Sunday, April 20, 2014

Happy Easter!

I really don't know where this year is going, Easter already? Really?

My morning started off as per the norm, with the animal routine.  Chickens, ducks, goats, guinea pigs and rabbit all have to be let out from their night accommodation and out into their free-ranging area or pens.  As far as chores go, it's one of the best.  I love popping my boots on at the back door and listening to the birdsong as the wild visitors chatter over their breakfast on the feeder.   As I walk up to the back field the goats bleat loudly their good morning hello as soon as they hear my distant approaching footsteps.  We have quite the conversation going back and to between ourselves as I ask how they are and they respond with their pleased to see you have you got breakfast yet whinnies.  As I make my way to the chicken coop I can hear inpatient clucks behind the door.  They know I'm there.    As they see the opening the chickens and ducks practically fall over each other as they hustle one another out of the way - wings flapping as they go, each clucking and quacking a hello as they disappear over the field towards the food bowls as fast as their little legs will carry them.  It's a race to get the best feeding spot, even though there are plenty of bowls and dishes to go around.

Fresh air and animal greetings is a great way to start each day, I highly recommend it for the feel good factor.

Apparently we were visited by the Easter Bunny this morning.  There were a variety of items spread out over the field, including snakes hanging from trees and Easter ducks, golden bunnies and plastic eggs in all sorts of hiding places.  Our real life chooks were most bemused by the new invaders, and the cats?  Well, the cats had great fun following the Easter Bunny around ensuring mischief was caused. Numerous things had to be replaced in their original hidey holes as Harry, Jasper and Eddie ran off with the found treasures.

I am so very glad that Easter Bugsy had been organised enough (for once!) to order in the plastic eggs and other small goodies before the Chelsea 'adventure' began - definitely a lesson learnt.

Unfortunately the weather was bitterly cold today.  The sunshine had packed her bags and headed off to some far away land, leaving a winter feeling wind and the threat of a downpour in her wake.  It meant that I didn't take as many pictures of the hunt as I would have liked to - too much shivering going on!  I think that the Easter Bunny may well make a return visit within the next few months when Chelsea is able to participate - she loves the whole egg hunting business - never too old for that sort of fun.

We shared out the larger chocolate eggs and listened to the sweet sound of silence as a whole lot of munching went on!

I received a phone call from a truly awesome lady whom I am extremely blessed to have in my life.  We spoke for over an hour.  We shared feelings, vented anger, laughed, giggled like schoolgirls and generally put the world to rights.  I needed that.  I really needed that.  J is a wonderful medicine that should be available to all.

It was soon time to head off to the hospital to see Chelsea so we threw a few bits and pieces into a bag and set off.  The roads were quieter today as many of the shops were closed in the city, so the journey was an easy one.

The good news today is that Chelsea looked heaps better!  It was so lovely to see her colour returning to her freckled cheeks.  I never thought I would be so thrilled to see rosy red cheeks, but boy they made me so happy.  It is a sign that whatever was causing the anaemia is finally being brought under control.  I know it is still early days yet and it will be a long road to recovery alongside a lifetime of medication, but there were rosy red cheeks!!!

Chelsea has to undergo a psychiatric assessment as apparently 2 out of 3 patients with Crohn's disease go on to suffer from depression and other similar conditions.  The steroids she is taking also highly amplifies the chance of her being affected.  It may be another battle that needs to be won, but that is one for the future.  One step at a time.  One day at a time.  Easy does it.

Other than that, there isn't a huge amount else to report hospital wise.  As it is Easter weekend it is a skeletal staff on rota so it's very quiet and only necessary procedures are carried out.  Chelsea is receiving two lots of intravenous medication a day - morning and evening, with an injection into her stomach at night time.   Her appetite has returned and she has been munching away which is so so so good to see - I must look like a right loopyloo standing at her bedside grinning from ear to ear watching her eat but it makes my heart sing.

We left her with sandwiches, hot cross buns, yoghurt, juices, chocolate and fruit, and headed to the car to take us on the journey home.  On the way out of the ward we were stopped by an elderly lady as she lay on her bed.  She said that we had a beautiful family and that all of the children had been so very well behaved and a delight to watch (we had baby Amara, Taisia, Callum and Tiegan with us today).  I think I almost burst with pride.  It was a lovely end to what had been a positive visit.

Saturday, April 19, 2014

Can we rewind please?

Today is definitely one of those best left forgotten days.

We had to go to the hospital with Chelsea for a colonoscopy procedure with the hope that answers would be given.  The MRI scan had showed nothing to really be concerned about - perhaps a slight inflammation of the large intestine but nothing of any note that would cause anaemia of such horrendous proportions.

The appointment time was 11.45am.  We arrived just after 11.30am and waited.  We waited and waited.  Poor Chelsea was feeling so weak.  Her complexion was whiter than white, she demonstrated lethargic symptoms and complained of feeling sick.  She sat with her head in her hands. It's hardly surprising.  She had eaten very little in the 3 weeks leading up to the hospital stay, then whilst in hospital she struggled with bouts of sickness throughout.  She was put on a clear fluid only diet in order to have a couple of planned procedures done (which were frustratingly cancelled), and generally suffered stress and disruption throughout her time there.  I didn't mention the little gem of her being woken at 1am by a patient in a nearby ward and threatening to hit her did I?  Thankfully another patient was witness to the incident and went to find a member of staff who escorted the threatening lady back to her bed.   The same lady woke Chelsea again when she  returned to her bedside at 2.30am and got angry calling her either a liar or thick as she didn't believe she was poorly.  That little episode ended with Chelsea having a cup of water thrown over her before the nurses intervened.

At home, Chelsea was on a very limited diet and then on a clear fluid only diet for the 24 hours leading up to the colonoscopy.  She was also given laxatives.

No wonder she was feeling so bad.  Ill and very very hungry.

We had paid for 2 hours of parking, one hour of that being wasted with a waiting room sit.  I know that in hospitals things don't always go to plan and I totally get that, but surely an appointment time is an appointment time and if a patient has ensured that they arrive in good time, it is only general courtesy to convey the possibility of a delay.

Apparently not.  No explanation nor apology was offered for the hours wait.

When Chelsea went off for the box ticking exercise with the nurse, Lee and I made our way back downstairs to put more money in the parking meter.  We had expected to be there for longer than two hours but wanted to check the procedure was going ahead today before forking out more pennies.  Typical that the machines chose today to mess around and finally a fourth machine was found and payment was made. I really didn't need that frustration today and I definitely didn't need the possible £60 fine!

Heading back inside to rejoin Lee and Amara, we went to the cafe for a snack.  We checked on Chelsea twice but there was no news, so at 3pm we went to sit in the car and await news - trying to keep Amara quiet in a hospital waiting room is really no fun at all.  Just before 4pm I received a text from Chelsea with the news I had been dreading as I knew what the resulting reaction would be.

She had to stay in.

The colonoscopy procedure couldn't be completed due to mass ulcerations and bleeding.  There was a lot of blood, A LOT of blood, clearly the cause of the anaemia.  Severe Crohn's disease was written on the notes, whilst the Doctor talked of Inflammatory Bowel Disease.  Gastritis is also added to the mix.  She should certainly never have been allowed home.

My poor girl has been going through so much and we were blissfully unaware of the seriousness of it all.

I hugged Chelsea and tears from both of us flowed.  The disappointment of having to remain in hospital was clear to see.  She had been very much looking forward to feasting on her favourite foods again and we had planned on a pizza fest after the procedure.  Not for the first time I felt so helpless.   My daughter was looking at me in the eye, hers filled with watery tears as she expressed her sadness and I could do nothing to ease how she was feeling at that moment.  My heart was torn into pieces and I just wanted a magic wand to make it all cease.

I returned home (an 80 minute or so round trip) with Lee and Amara to get everything that Chelsea needed for another hospital stay.  We sorted out nightwear and clothing, food and drinks, a phone charger and the DVD player.

Yuki our gorgeous budgie, our very last budgie of the group, was found dead.  I just couldn't deal with that at that moment and the emotional floodgates opened.  Once opened it was difficult to close them again and infrequent sobs could be heard and tears fell as more items were added to the bag.

We headed back to the hospital, this time with Taisia in tow.  Chelsea was placed back on the same ward as before and is even in the same bed.  We had a chat with the consultant in charge and talked about treatment and time-scales.   At least another 4-5 days in hospital is necessary in order to bring the ulcerations and bleeding under control.  Medication is being given intravenously as tablet form wouldn't work at this stage.

At 6pm we left the hospital and returned home to feed the rest of the crew.  Logistically things are a bit of struggle and unfortunately financially things are tricky - although that is of course the very least of our concerns.  Up to now we have had to put in £120 worth of fuel for the to-ing and fro-ing to hospital (we usually manage on around £20 a week if that), and the car parking charges soon add up.  Today alone we paid £8 to park in the hospital car park.  Of course, there are all the little 'extra's' that go along with a hospital stay - any needed toiletries, boredom busters, food cravings etc.  As said, the financial cost is the very least of our worries at this time, but wow, it has sure opened up our eyes.  I am definitely going to look at some sort of fundraising for families undergoing hospital care and struggling with the costs involved.

I am so very very thankful that the diagnosis is as is, it could have been so very much worse.

Now I'm off to have a chat with the Easter Bunny about the possibility of an Egg Hunt....

Friday, April 18, 2014

The Healing Power of Nature

I knew upon waking that today was not going to be the easiest of days to get through.

Thoughts of Chelsea's ordeal at the hospital tomorrow already meandered through my mind no matter how hard I battled to make them cease.  The diet that Chelsea has had to follow since leaving hospital has been tricky enough to follow - no fruit or vegetables (including potatoes), no red meat, no nuts or dried fruits, no high fibre foods, no wholemeal foods, no jams or preserves with pips or seeds...the list goes on and on.  Trying to find a well-rounded complete meal with what foods were left has been a test, but of course I'm ever so thankful that she was able to leave and come home and the diet is really a minor matter, I've never let myself forget that.  By 12 noon today that little bit awkward diet was transformed into a clear fluid one. It has been so difficult to ensure that everyone else in the family has been well fed throughout the day whilst fighting with the guilt that Chelsea was unable to eat alongside.  She has been so wonderful throughout though, never once complaining.  I know it must have taken a lot to not fall into the self pitying woe me trap but I must say I have never even seen her take a single step towards it.

First thing this morning I had to go out to buy some goat and chicken feed to ensure we were covered for the bank holiday closures.  I would never usually leave it so late to stock up but I have needed to stay at home or very near to it in case of any signs of deterioration in Chelsea.  We use a local feed merchants a short drive away whose prices are really competitive and stock levels consistent.  Whilst were there we perused their plant section and ended up picking up a few fruit pots, flowers and compost.  If memory serves me correctly we purchased Blueberry, Raspberry, and Rhubarb plants but I may well be mistaken as we talked about many.

With the car packed to the rafters with our new purchases, we nipped to the supermarket around the corner to stock up on a few more items that Chelsea could have during her clear fluid task.  We also managed to pick up new summer canvas pump style shoes for Joseph, Callum, Tiegan and Taisia which was a pleasant surprise - 4 down, just one more to go as Amara isn't ready for shoes just yet.  I do so hate using supermarkets and would very much prefer to use the small local shops but I'm afraid quickness and convenience really was the order of the day.

Home quick sharpish to check on Chelsea and have a lunch of hot-cross buns, trying hard not to make it a mouth-watering experience for that one unable to partake.

The beautiful sunshine very much blessed us with its presence today and boy oh boy it was extremely welcome.  I'm not sure there is anything quite like feeling the warm embrace that envelops the soul and it appears that heavy woes of burden and stressful worries just melt away.  Taisia very much enjoyed feeling the warmth dancing upon her skin and she wasn't shy in showing it...

Oh how she held that little balloon with a grip so tight as she skipped and frolicked along the driveway.  A sheer joy to watch her basking in such simplicity.

Chelsea wasn't feeling too bad this afternoon although the powdered drinks she was instructed to sip were extremely unpleasant.  She wanted to lie down on the sofa and watch TV so we decided that we would take the small people out for a walk to give her some peace and enable her to sleep if her body desired.  Joseph said he would stay with her and phone us immediately in the case of any problems.  We would stay close, just venturing down the lanes, armed with cameras at the ready, aiming to seek out hidden treasures and enjoy a bit of 'other' family time.

It was a beautiful walk.

It would actually be really difficult to have a walk around our local area that wasn't classed as beautiful, we are so blessed to live here.

I carried Amara in the wrap sling and she snuggled in close and soon fell asleep obviously feeling content and secure against her mama's heartbeat.  There she remained until our walk was almost at an end, a good 2 hours later.

Whilst Amara rested others ran...



Took photographs...

Talked to the animals...

Made wishes...

Gazed at beautiful skies...

Sought out tiny creatures...

Gushed in delight at baby ones...

Rode horses...

Admired the true surrounding beauty...

and well, just managed to look awesomely cute...

The mammoth walk tired us all out - even the dog - but strangely it also invigorated and enthused.

I felt as if my soul had been cleansed, fed, and healed.

We discussed so many things whilst strolling, made so many plans, answered so many questions and laughed so many times, I couldn't fail to be encouraged.  Our home-ed journey feels like it is taking on a whole fresh beginning this year with the older two heading for college in September and Taisia emerging with a real thirst for knowledge and learning.

Exciting times lie ahead I feel.

Thursday, April 17, 2014

A full house once more....

It is so wonderful to have Chelsea home again.  The house is feeling complete again and I no longer feel as if I have a limb missing!   Obviously she isn't 100% well, it will be a long road to recovery and we are still seeking a diagnosis of the cause, but she is receiving lots of pampering and love and being at home seems to suit her.

I'm sure she will be rattling soon with the amount of medication she is needing to take...

but we do whatever it takes.

Although we have to stay at home a great deal, or at the very least remain close to home in order to keep an eye on Chelsea, it does feel as if we are slowly sneaking back into a routine and that is feeling really great.

Now we are not to-ing and fro-ing from the hospital, Amara is enjoying more quality time with mama again, and it seems she is rather happy about that...

Our caterpillars have arrived for our 2014 butterfly project.  Their rapid growth still amazes me!

Taisia has been enjoying playing the Ant Farm game...

and this morning she was chief egg collector and photograph poser...

whilst the guinea-pigs Topper and Nibbles posed beautifully as they came out for breakfast....

I've really enjoyed taking photographs again so I think I shall carry the camera around with me more.  If I've learnt anything from this experience of Chelsea being so ill, is not to take anything for granted and make the most of each and every day, something that I've often thought but it has been heavily reinforced.   I have learnt that it is also vitally important that I look after myself and that my own needs are met.  I didn't really realise just how important that was and I've always felt a little selfish to ask for 'me' time and do something I love.  I know now that if I don't look after myself and my own needs, I really struggle to fulfil my roll as a mama.  I feel emotionally drained, physically exhausted, and just generally running on low battery level.  I need to make time for me and for doing things I love and feel passionate about - photography, home-ed, website work, art, and nature :)