ASHTON ACT 2

So, yesterday was a very,very long day. We waited eight hours before Ashton was taken to theatre. The delay was a giant aneurysm in another patient, so we had no option but to wait and exercise gratitude that we COULD wait.

Finally, at 3 o'clock she went in for what Dr HS called Ashton Act 2 ( funny bloke), and Mark and I left the hospital and went home for a nap. Well we tried to nap. I just stared at my ipad screen and counted down the hours. Eventually seven hours later the doctor rang. I will never understand how doctors can perform for such long periods of time.

He managed to remove most of the fistula and it's now downgraded to low. She will be returning to theatre soon for him to finish it off. To quote him " I'm not taking any chances on it regrowing". This is music to my ears because I want the bloody thing gone. She has a 21st birthday and a new uni year to deal with!

So we walked in to the high dependency unit this morning expecting to see someone looking somewhat washed out. Of course that didn't happen. She looked amazing and alert, tired but happy. That's how you recover folks! Her blood pressure is a little low, other than that she looks very well. My child is just amazing.

And now I want to say thankyou to everyone for yesterday's support. Please keep the prayers coming as there will be more procedures and she will need lifetime monitoring. I asked for a circle of prayer around her and we got that AND we could feel it. As Ashton was wheeled into theatre she said she felt calm and peaceful.

Apologies to those on my facebook page who have already seen these photos. They're all I've got at the moment and I just wanted everyone else to see her happy, well face.

Love and hugs.

Till next time...xxx

WAITING, WAITING AND MORE WAITING

So, we're here at the hospital and so far we have been here six hours and still have not gone to theatre. My poor girl has not eaten or drunk since 8 pm last night and is now fast asleep out of pure exasperation.

                                

The doctors came in to see her hours ago and explained the procedure over and over again. I wish I could put my hands over Ashton's ears when they start talking about the risk of stroke, paralysis and death, but I understand it's something they need to do. I understand it really but I don't want to hear it.

We have one new doctor. Bertie beetle aka Dr Albert has moved on and that makes us all sad because he is a lovely doctor with great compassion. His replacement ( or the new model as Dr HS calls her) is a polished female doctor with a beautiful English accent. She will of course require a nickname and this will come with time. The main doctor remains the same, though slightly dishevelled which is unusual for him. That's what happens when you have three kids!!

Life in a hospital continues to fascinate me. You just get all sorts. I sat at lunch willing myself to say nothing when a woman was trying to feed a very young baby solids. Her friend was shoving spoonfuls of something into another child's mouth. The noise from both children was unbelievable and my shattered nerves couldn't take it. Mark and I just left.

Two orderlies nearby are having a very exciting conversation about whether a certain orange chair belongs in one place or another. Oh my goodness, it's the end of the world because it should be in the female change room not the males. Scintillating conversation! The excitement is killing me.

The nurse has just put Ashton on Iv fluids as it's been ages since she had anything to drink. The hold up is an emergency, as usual. I know it needs to take priority. I would want it to take priority if it was my family BUT please God make them hurry up. It's been too long a wait.

Got to go. An exciting conversation about the cups in the kitchen is breaking.

BRB

GIVING PLEASURE TO OTHERS

There is a cute little shop in this city called " Sugarplum Sweets" which makes lemon meringue cupcakes that are to die for. The girls and I went there for afternoon tea and I had one which had just been made. Gooey meringue, tangy lemon curd  and cake so fresh it collapsed in my hands and was shovelled straight into my mouth. I was in heaven.

The ability to create something, edible or otherwise, which gives pleasure to people is a gift. This morning I had breakfast with one of my oldest friends Anna. She is one of the most talented people I know. Not only is she an experienced teacher, she is also a published author of plays and songs for children. She has recently been commissioned to write a school song for a new college in Perth and this will be her third time doing such a job, such is her talent.

My big thrill today was to find out that an online Canadian chiropractic magazine had listed my blog under Arts and Entertainment. I am honoured that my writing is entertaining enough to receive this honour, even though the subject matter can be quite tense at times. Maybe it's an omen - first an online magazine, then a book publisher. Watch out Oprah and Ellen! Regardless, I am pleased that my writing gave sufficient pleasure to someone to be chosen.

http://paper.li/DrRichardKjaer/1313554978

And then there was the radio announcer, Ben Fordham, who responded to Ashton's tweet to ask his listeners to pray for her in the lead up to her 14th surgery on Friday. Such a simple task, which when completed gave her such happiness and pleasure and filled my eyes with tears of joy. He could have ignored it, but he didn't.

It really doesn't take much to make people happy and give them pleasure.

My greatest pleasure this week would be knowing that Ashton's surgery is successful. I pray for God to guide the doctors' hands and for our gift to be her improved health.


Till next time...xxxxxxxxxxxx

4 DAYS TO GO

OK...FOUR DAYS TO GO!!!

This Friday Ashton is back in surgery for work on the fistula in her neck. It's been a long three weeks waiting for this procedure and we are almost there. As she says its nerve wracking but we are so close now, we're keeping it all together.

Well, I'm drumming up support worldwide. Prayers have started everywhere and I'm hoping for the same feeling I've had before, of a world wide circle of prayer around her. After that as I said on Facebook and many times before, it's in God's hands.

Oh by the way... I tweeted the Pope. Yes he has a Twitter name @ pontifex, so I tweeted him and asked him to pray for my daughter. Will be over the moon if I get a reply.

The husband gets here in three days and then we are ready for the warrior support Ashton needs. I can't wait till he gets here. I really need him by my side. Ciara is working during the surgery. It's her way of keeping busy because waiting does do your head in.

Meanwhile, the book is going well and after this Friday I will finish it. It's rather surreal to revisit some of the last few months but also uplifting when I see the progress that has been made. Regardless  of whether I publish it or not, it's kept me busy and focused.

I may post quite a bit in the next couple of weeks. Hope you don't mind! I need to keep my anxiety levels down and writing is my way.

If you want to leave words of encouragement for my brave 20 year old, feel free and I will make sure she sees them. 25 days till her 21 st birthday and God willing all will be so much better by then .

Till next time...xxx

LIEBSTER AWARD

I had a lot of trouble getting to sleep one night, so when my husband was snoring, I grabbed my ipad for some entertainment.

What a surprise! Anima Choudhury (anima-choudhury.blogspot.com) had nominated me for "The Liebster Award."

What an honour! I had never heard of it before so I've pinched the next bit from Anima's blog to explain to you all.

History

The Liebster Award originated in Germany. The German word Liebster means sweetest, kindest, nicest, dearest, beloved, lovely, kind, pleasant, valued, cute, endearing, and welcome. In short, this award is given to the upcoming promising bloggers who have some worth-reading content and certainly have less than 200 followers as a recognition of their talent and as a way to greet them "welcome". This a small act of inspiration that might change a blogger's whole point of view, just like it changed mine. The Liebster Award is an award for Recognition. You would not get any money, or cup, or medal, or certificate; just a recognition which will give you a spot-light mark in this crowded blogging-market!

Another thing about this award is that this is "Pay it forward" award, like a 

chain-reaction. Once you have accepted the award, you have to search for other bloggers, who are emerging as new buds with some really promising content which you find worth reading. You can accept it, or you can let it go; no harm done. Still, I want to say that it might make someone else's day if you would accept it. However, if you want to accept The Liebster Award, you have to follow six simple rules which are:

I have said this before, I'm always amazed that people read my blog so to have someone acknowledge it in this way is such an honour! To get it at the start of a New Year is a good omen...fingers crossed.

Ok...let's play the game!  
11 Random Facts About Myself

1. I was born in England but live in Australia. My parents are Maltese.
2. My greatest wish is to be a perfect weight and to speak Italian fluently.
3. When I read a good book, I like to finish it in one sitting.
4. My favourite foods are all the ones I shouldn't eat.
5. I have seven sisters in law.
6. If I could have one wish it would be to have my dog Harry back.
7. My greatest achievements are my children
8. I make a mean apple pie
9. I am really an emotional weakling - if you hurt me I bruise and bleed.
10. I am very dissatisfied with my life at the moment and its upsetting me.

My questions to answer

1. Are you passionate about blogging? - yes I am, probably almost getting obsessive because I have far too much time on my hands at the moment.
2.  Where do you want to see yourself in next 10 year? I want to be financially secure and I want to be happy in the job I am doing. I want to be well travelled.
3. What is the source of your motivation? My motivation comes from my family and the situations we go through. I'm also a high achiever. I like to keep busy and being busy keeps me motivated.
4. What is the color of your eyes? brown
5. What is the motto of your life? when life gives you lemons, make lemonade.
6. What is your favorite book, and why? Too hard a question to answer. I love books - the words, the covers, the feel of them
7. Pizza or Wine? - pizza hands down
8. What is your dream-place you always wanted to visit? I have always 
9. wanted to travel to Italy and start at the top and work down the country, taking my time and learning the language as i go.
10. What is the worst fear of your life? My worst fear is that someone I love will die.
11. Do you think a blogger can make a change to this world? Change happens one person at a time - so yes!
12. Do you believe? or You think that humanity is going to nowhere? - I think we are losing some fundamentals of being a community. I dont think we're going nowhere...yet

BLOGS I AM NOMINATING

1.Hannah Heath

2. Olivia's Catastrophe 

3. The Keyboard Talk

4. A Geek and a teacher

5. My wife makes

6. Life.Love.Beauty.Paradise.

7.Amiey Laureen

8. Learning to love yourself

9.Keeping it real with Maureen Millier

10. Mom script

11. Adventurous Ruchi

YOUR QUESTIONS TO ANSWER:

1. Where are you from and what's the weather like?

2. Why blogging?

3. Who is your greatest writing inspiration?

4. What is the story behind your blog title?

5. What is your favourite ICECREAM flavour?

6. What do you know about Australia?

7. If you had one writing wish granted, what would you ask for?

8. Who would you invite to write an intro to your best seller?

9. What is the best gift you ever received?

10. What is the best advice you would give someone writing their first blog?

11. What sort of food represents you and why?

Congratulations to you all !!

 

How to Add the Badge on Your Blog:

The Badge

It's simple.

> Download the image given above 

> Go to Dashboard 

> Go to Layout 

> Add a Gadget 

> Find "Image"

> Chose file ( the badge you downloaded to your computer)

> Click on "Shrink to fit"

> Save

> Save arrangement 

TOO HOT TO BLOG VLOG

So, I look terrible today. My hair is in need of a colour and I've got no makeup on. Of all days, today I decide to do a video blog. I think the 41 degree heat has cooked my brain. Anyway today it was time to go to genetic services at King Edward hospital for Ashton to be tested for the Cowdens gene. She took it in her stride and I suppose it's done now and all we can do is wait and see. A positive result changes nothing , but would finally give a reason why the fistulas grow so rapidly. A negative result leaves a reason for her condition still a mystery, but means her risk for all the Cowden's related issues remains the same as the general population. There is no winning here.

Ten days to her next surgery. We are keeping busy and trying to laugh lots. Making these videos helped.

Nine weeks of waiting for a result! Oh well

Till next time...xxx

PS It took me absolute hours to work out how to upload the videos. Hope the links all work. You see...you can teach an old dog new tricks. Off to the hairdresser. Have a lovely day xxx

FRUSTRATION, PATIENCE AND BROWNIES

I have been staring at a computer screen for days trying to overcome the writers block which has overtaken me. You see I can't think straight anymore and I find I also can't talk without effort. I certainly can't be creative and to a certain extent creativity is required in a blog. At one stage I even considered deleting it all so that I wouldn't have to write any more.

This story you see is starting to take its toll on me. Waking up every day and facing what is in store is draining the heart out of me.

Last week we found out  that the fistula in Ashton's neck has grown considerably . You may remember that the doctor was on a mission to destroy this fistula back in November, when a problem in her thyroid stopped proceedings. Investigations followed and  plans were made to reassess in another year. Problem solved....or so I thought.

You would have thought it was then a simple case of getting back to the original plan. Hell no! First it took over two weeks for a report to reach Ashton's doctor. By that stage he was off on leave to welcome baby number 3. (!!!) Then it was Christmas. Then it was New Year and THEN he went on holidays.

Now we certainly don't begrudge him his down time. This doctor and his team work bloody hard. But when we finally got to a review early January and found out the fistula had grown significantly, we didn't expect to have to wait another 3 weeks to get to theatre.

Yes, I know about triage. I get triage, but I don't like it when my daughter's condition has become worse. But its pointless isn't it? Its pointless to moan because there is nothing I can say or do to influence the tight schedules and tight budgets  these doctors work under. All we can do is carry on and pray.

                                                      
And eat chocolate. A friend just brought me a plate of homemade brownies and they are to die for.

My support crew has gone into overdrive. My news feed and messenger is filled with  positivity and prayers and virtual cuddles. They can tell that I am close to breaking point. But...that is not an option.It never has been.

Last night I messaged another mother whose teenage son is going through a shockingly similar situation. I needed someone who gets it. She told me not to let the Devil get a foothold in my mind. Now I'm Catholic and we don't seem to talk much about the Devil, but for some reason this comment made sense. Don't let your mind be full of negative thoughts. Don't let these thoughts take over your thinking. Just remember God is on the case. 

 I get it.I've always got it. I just forget and lose hope every so often.

Today was no better. Ashton developed a headache overnight and though I suspect the assignment due today was a contributing factor, she has no option but to head to the ED and submit for more tests. Stress? Tension? Fistula ? Who knows? There is no extra blockage, so this time it might be a normal people's headache. Shame she can't manage it like a normal person would. Imagine if we all had to go to the ED everytime we had a headache. Saturday mornings would be crowded!

So that's the 19th almost done with and that means 18 days till surgery. Let's hope this fistula doesn't increase anymore in the meantime. Enough is enough.

Till next time...xxx