Update

We have been back in the UK now for 5 weeks and it almost  feels like we have never been away. I am still trying as hard as I can to get back out to Perth - I still have my visa, but its a job that I need to support us. My Sister in Law wants us to go back out and work with them again, but to be truthful its probably going to be the last option as the stress caused by their constant fighting, arguing and shouting is almost unbearable. Plus the complete lack of any privacy whilst living in the 'shed'. So I'm trying my hardest to get another job but it is certainly proving difficult.

Back here at The Little Terraced House, we are surrounded by most or our belongings packed in storage boxes. Every thing should have been shipped out to Perth last week, but for now its on hold. So I am at the stage of unpacking essentials such as warm clothes (I don't think I have been warm since we arrived back here) and cooking items, baking trays etc. I want to get the pressure cooker back out, but I know its in box 13 which is under boxes 14, 15, 16 and 17 and behind boxes 24, 25, 26, 27 and three mirrors, and to be truthful its too much effort right now. I located the slow cooker so that will have to do.

Himself has not been at all well since we arrived back. He was diagnosed with type 2 diabetes about 12 months ago and we had it fairly well under control until recently. Now we can't seem to get his blood sugar count down to anything near sensible regardless of what we do or what he eats. His blood pressure is also sky high and he is having mood swings which have to be seen to be believed. He does know that he is having  them which is one good thing. (Imagine a room full of women with PMT) - well he is like all of them at the same time !!!!!! :-)

I have an interview for a job here tomorrow, so fingers crossed that it comes off as we need finances of some sort whilst we sort out what the heck we do next.

Charlie will be seeing his new medical consultant at the end of this month, so we may know if and when his next op will be. I though I would put some of the details of HLHS on here so you can see the challenges this little man of mine has faced.

Hypoplastic Left Heart Syndrome - which means the left side of the heart does not develop or is under developed 

STAGE 1 – Norwood

This surgery is preferably performed in the first week of life. A repair is made to allow the right ventricle to pump blood to both the lungs and the body. Because blood flow must be forceful for the immature lungs, the surgeon creates a tube from a branch of the aorta to the pulmonary artery known as the modified Blalock-Taussing shunt. The baby will still appear blue (cyanotic) after this surgery. Charlie had his done at 1 day old, we hadn't even been able to cuddle him at this stage. 6 hour surgery.

STAGE 2 – bi-directional Glenn or Hemi-Fontan
This surgery is preferrably performed at about 6 months of life when the blood starts to flow more easily and the ventricular force is not needed. The surgeon creates a direct connection between the superior vena cava and the pulmonary artery thus diverting half of the blood flow without the assistance of ventricular force. This reduces the work on the right ventricle by allowing it to only pump blood to the body and allowing all blood from the upper body to the lungs. Charlie had this done at about 8 months old and had to have a third open heart op as the aortic arch kept collapsing. It turned out that his vocal cord nerve was wrapped around it and in doing the repair Charlie lost his voice for nearly two months and the surgeons did not know if he would get it back. He did get his voice back eventually, but it is so distressing watching a baby silently crying in pain....

STAGE 3 – Fontan
This surgery is preferably performed between 18 – 48 months. The surgeon connects the inferior vena cava to the pulmonary artery. This will allow the remaining blood coming back from the body to go directly to the lungs. The final result will be no mixing of blood in the heart with more oxygen rich blood going to the body. This will significantly improve the child’s health and growth.This is the next op that Charlie will have - date as yet unknown.

Heart Transplant – May be required.
HLHS requires a life time of follow up care. Most HLHS patients will require heart medications for life. They are at a high risk of heart valve infection (endocarditis) and require antibiotics before dental work and most surgeries. At this time, life expectancy is relatively unknown. 70% of infants who survive heart transplant or the Fontan will survive to the age of 5. Whether he will eventually need a transplant we don't know as yet. All the surgeries carried out for HLHS are palliative care, there is no cure for HLHS, but the series of three ops are hoped to get HLHS children to teenager hood where by if they do need a transplant they would be of a physical size to accept an adults heart if a matching one was available. (it is very rare for a child's heart to be available for fairly obvious reasons)

Birmingham Children's Hospital where Charlie has had his previous 3 majors and 4 minor ops, are wonderful and we know that their survival rate is growing year on year with the ops that they carry out, which does give us hope for the future.

What is so wonderful (in some ways) is that if you saw my little monster, you wouldn't immediately know that he has a life threatening illness which could kill him in a second. He is growing quite well, although Lewis at a year younger is about to over take him in height and weight, and he zips about like most 3 year olds, but get breathless quickly and goes blue, so he has to have plenty of quiet times to give him breathing space - not easy when your 3 year old head says 'I want to go and do xxxx' !!  

This five weeks is the longest I have been apart from my little monsters and I am missing them so much that it hurts. Talking to them on skype is just not the same as a hot sweaty hug, and hearing Charlie saying, 'Nana you get in your car and come to my house now!' breaks my heart.

This photo was taken last year at Brighton and is one of my favourites. Lewis (Mr hollow legs) had just swiped Charlie's muffin out of his hand and you can see Charlie looking at him as if to say 'Oi give it me back!!'

Frugal Queen

I read with great interest Frugal Queens post tonight. She is one of my hero's and I applaud how hard she has worked to get to where she is now - no mean feat and plenty of self sacrifice, but with an unending purpose, a huge goal in front of her that she WILL achieve.

We know too here at the Little Terraced House how much life has changed in the past two years. Much of it I'm not ready to talk about here yet, some of it is too painful and still real and biting everyday, but one thing I do know for sure, we are not yet totally beaten, I'm still fighting and trying to get some semblance of our lives back. The latest setback with Perth and the littlies being the other side of the world, is still to be resolved, but I haven't give up and like Froogs I will keep going.

Baby Bump

Today my darling daughter in law had her 20 weeks scan. As Charlie, No 1 Grandson has Hyper Plastic Left Heart Syndrome (left side of the heart did not grow), Lewis, No 2 Grandson and Bump No 3 have had detailed heart scans at 20 weeks gestation. Lewis's heart was fine, no problems with that little live wire at all, I am pleased to say.

Bump no 3 had their heart scan today and I am pleased to say no problems found at all, great news.

Oh, and its another boy !

More cuddles for Nana - if I can only get a job back in Perth.

A job which I would have really really really loved (combining my love for my work and gardening) went before I could apply and I am so sad, it would  have been the best job in the world (Sarah, I know you will know what I mean.......) They have at least said they will keep me on file for the future.

All I can do is keep trying....

A Week of Highs and Lows

We arrived back late on Monday night and two hours into an exhausted sleep I had a phone call from a Perth company that I had sent a CV to for a position that was advertised. A Skype interview was arranged for the following afternoon which lasted nearly an hour and a half. A second Skype interview was then arranged for 12 hours later with a panel of 4 senior managers and directors - this also seemed to go OK and lasted well over an hour. I then received an email from the HR department (this is a major international company) to say that their may be a further round of interviews before the decision was made, but that she would be in touch with me early this week to give me feedback on how the interviews had gone. I have to say I was quietly hopeful but refused to get my hopes up.

I hadn't heard anything by this morning, so I dropped a courtesy email through to the HR dept but hadn't heard anything back by close of office hours.

Then, half an hour ago when checking a job search site that I use and discovered what I think is the same job, now being offered by an agency, and only posted 20 MINUTES prior to my logging on to the site !!

I feel gutted, just a simple email saying thanks but no thanks would have been polite and professional, but to apparently have re listed the same job now with an agency - well, that's not nice.

I was already feeling pretty low, but right this minute I feel, well crap.

One Week Later

Last weekend was hard. We spent most of it with my son, daughter in law and Charlie and Lewis. We had moved to a hotel for the weekend and for the first time since we had been in Perth, the family came to us, it just hadn't been practical for them to visit us when we were living in the 'shed'.

Charlie wanted to stay with us and wanted to know where his T bed was (he has Thomas the Tank Engine bedlinen on his bed back in the UK) he was most indignant that Nana hadn't got his bed there at 'Nana's Hotel House'. It was so hard to spend time with them all knowing that soon we would be getting on the flight back to the UK......

Sunday we just chilled out over at my son's house. He had suggested that we go to the beach for the afternoon, but the temperature was nudging 40 degrees again, so we gave it a miss and just spent time together, talking, drinking tea and playing with the littlies - hands, knees and whoops-a-daisy was the order of the day with Lewis booming Tra La La Laaaaaaaaaaaaaa at the top of his voice at the end of each round of moves. He had us all in stitches as he bounced up and down the long hall way shouting his head off.

Sadly the day went far too fast and the goodbyes came at tea time. We hugged long and hard and Charlie got really upset again as he wanted to go with Nana and Grandad to 'Nana's Hotel House' and we had to leave him crying in his dads arms shouting 'Nana Come back!

I drove around the corner out of sight and sat and broke my heart crying, Hubby was teary eyed too but he was trying to be strong for both of us. We were both pretty quiet on our way back to Perth to drop off the car and get back to the hotel. The packing was finished off and we tried to get a couple of hours sleep before we had to get the taxi to the airport at 3.00 am.

Almost 24 hours later we were back in the UK. And my heart hurts.

Thursday

Flights are booked, we go back to the UK on Monday morning. My heart is breaking, I drove home from my son's house in tears last night having left Charlie and Lewis both screaming, "Want to go with Nana!" as we pulled off the drive way.

It had been a fraught emotional evening, Dear Daughter in Law is dreadfully homesick and is getting more and more withdrawn, Dear Son had had a really bad day at work, hates his job, is trying to study for an exam which he has to take in the next 3 weeks, is sick of travelling each day, is pissed off that we are going home and the littlies are picking up on the tensions all round, hence why they wanted to come with Nana and Grandad last night.

I spoke to both of them this morning, Son is still as angry and pissed off as he was last night and is already wound up anticipating another rough day at work. Daughter in Law is tearful and quiet, the littlies are creating havoc in the back ground.

I feel like a traitor but unless something wonderful happens on the job front today or tomorrow, we will be on that dammed flight and my heart will be breaking all the way.

Harley

For the first couple of weeks after moving in here to our bedsit in the cow shed, we were constantly hearing motorbikes revving up late at night. We weren't too bothered by this, we are right next to a busy highway which never sleeps, so we just thought that it was traffic on the move.

But three weeks into our move here we spent the day at Kings Park, which is the most beautiful botanical park in Perth which over looks the Swan River and hidden away in the displays near to the 'wet' areas, I found a sign telling us about Perth's Motorbike Frogs (I am being serious, this isn't an early April Fools Day Joke', so when we got home I googled them and found..

Motorbike Frog

Litoria moorei is a frog well known in Southwest Australia, its notoriety deriving from the call suggestive of a motorbike revving up through its gears which gives it it's common name, the Motorbike Frog. Wikipedia

Now we know what we are listening to we look out for Harley as he become known, but have yet see him.

The past couple of nights he has been joined by Suzuki and Triumph  -  and the evenings are getting noisier !