Festive Cheer - HO HO HO

I/we finally succumbed to the Xmas bug - the first ever Xmas tree at 11 Kitchener!!

Guy Flyin!

Taupo Photos.

A tiring time had by all - especially those who had to bike!! The split times don't make good reading - expected more from those who had been training!

Suppose it gives us a target for next year - yeah right!

Taupo and Tonsils

We had a wonderful weekend with all the Hodson clans in Taupo. The weather was baking hot which slowed down the grown up riders a bit (that was their excuse!) but we all got in the lake for a couple of swims.

Bevan, Nick, Bruce and George did a great 40kms each in the blistering sun. George picked up Reilly (10), Harriet (6) and Oliver (4) for the last 5kms into town with Bevan and Nick. They did really well and just about caught up to Guy and I riding with the Heart Children. Guy loved being on the back seat of the bike with me and giggled all the way.

On the Sunday there was a ride to try and break the world record for the number of riders in one pack. They didn't break the record but 11 of our clan did the 5km ride in, including 3 year old William who got cheered all the way by the crowd, and Cormac (4). It's a big ride for small people so they were a bit tuckered out.

On Tuesday Meg and Guy were both sent home from CK, sick. Guy has (yet again) suspected chicken pox - I'm not convinced. Meg has tonsilitis and has been miserable with it. I'm not even going to hope we are done with the medical fraternity for the year...

Wednesday November 26 | BREAKFAST | ONE NEWS | tvnz.co.nz

Wednesday November 26 BREAKFAST ONE NEWS tvnz.co.nz

Video has disappeared off the page hopefully it will stay on this page for a while!

** Related Videos - Tamati's Cycle Challenge Pt1

BREAKFAST | ONE NEWS | tvnz.co.nz

BREAKFAST ONE NEWS tvnz.co.nz

Once you get into the TVNZ site scroll down to videos and click on Tamati's Cycle challenge PT 1

BREAKFAST | ONE NEWS | tvnz.co.nz

The video has the little fella on - in case you're wondering!!

*** If it takes too long to open in media player use Veiw in flash (Bottom left corner)

Update from the medical professionals

We had another good appointment yesterday. Guy was very cool and calm having the ECG and the Echo.

So for the results (which I kind of understand):

• heart size has gone from 72 to 52 and normal for his size is 33. I'm not sure what the numbers mean but they are heading in the right direction!
• his blood flow has gone from 17 when in hospital to 35 last time and is now 42. Normal is between 55 and 70
• fractional shortening (not a clue what it means, but am about to google it!) has gone from 15 to 22 and normal is 33

He has come of the bottom line of the weight percentiles and has grown along the average line in height. So weight is gaining faster than height which is also good.

So yah! Superhero status is still well and truly maintained.

There are no changes to any drugs - don't mess with a winning formula! The docs are happy enough to have pushed out his next appointment by a month, so we won't be back for another 4 months.

If you haven't seen this, please take a look - next weekend's activities

www.fundraiseonline.co.nz/guysflyers

And for those who can, watch Breakfast next Wednesday morning (26th) for Heart Kids - Guy and I will be elbowing our way to Tamati's side for our 15 seconds of fame!

We had a lovely night last night with a barbecue for Maree and Johnny (not exactly the weather for it). I could have done without Maree getting creative with cocktails at 11pm. Mastering a cocktail for 42 Below passionfruit took a few attempts and some interesting ideas... photos to come at a later date. We are heading to Omaha for the night tonight to spend more time with the Aussies.

Latest Goss & Pictures

Kia Ora All,

All is well in Sunny Sandringham! Not sure where the last few weeks went - perhaps the pictures will explain.

We went to a Heart Kids Bike-a-Thon last week held at our favourite place - Bunnings Warehouse. One of the photos is of Guy racing around the track - couldn't get him off!! I think he enjoyed the wide open spaces of the Bunnings carpark! Meg had a spectactular pile-up which dampened her enthusiasm a little.

We also had Cousie Cormac's birthday the same day so we were all a little tuckered out on Saturday evening - not too many photos of that as Tessa was on photogragphy!!

Guy has started back at daycare on Thursdays and will be back on Fridays as well in early Decemeber - means his spots for next year are gauranteed but also means i have to do a few extra days- doh!

Next week is a busy one!!! Guy has his 3 monthly check-up on Wednesday and Aussie Will & Lucy are coming to stay for a few days on Tuesday - their parents are also coming.

Bye for now!!

Getting Older & Bolder!!

Collectively Kids Farm Trip.

Kia Ora All,

Today we went to the Mt Albert Farm with our day care. We had a great time and even got to have a ride on a huge bus.

Hope you enjoy our photos!

Meg & Guy xx

Overnight in Starship

We had a night in Starship on Friday night. Guy hadn't been well for the two previous days - not eating, not taking his meds well and generally "droopy". We stayed overnight in isolation in a different part of Starship (we really are getting to see far too many different wards) as he is covered in spots which the doctors were concerned might be chicken pox (they aren't).

We were discharged later on Saturday but Bevan and I then seemed to have a tummy bug, so that may have been his problem. He just can't shake a bad cough he's had for weeks now. It shakes his whole little body, poor wee man, and he is throwing up with it most mornings.

We have our next appointment set in the heart clinic for a few weeks time so that will be a full work up and show what is going on with his heart.

Meg, in the meantime, had a wonderful weekend. She was whisked off to stay with Cormac for two nights. Aunty Rachel indulged her and she has gorgeous new haircut, pjs and undies!

Meg apparently decided that she should try swimming without arm bands... luckily Uncle Nick was prepared for the inevitable result and picked her up off the bottom of the pool before she drank too much! Hopefully the weather will play its part and there will be lots of time to learn to go arm bandless this summer.

Vote for Heart Children

Hi, if I haven't already spammed you (!) take a look at this... Heart Children are a fantastic source of practical support and advice for families with super hero children who have dickie tickers. This is a great way to help them get a bit of extra cash for the great job they do...

VOTE FOR HEART CHILDREN NEW ZEALAND AND HELP US WIN $15,000!
Visit www.sovereignsunshine.co.nz, register your details and vote for us, it takes a matter of minutes and will make a world of difference for the 12 kids born each week with a heart defect in New Zealand.

speed demon..

School holiday's are over so Bevan is back to work, but not before devising a new way to for the kids to entertain themselves... well, Meg at least. Guy hasn't quite got brave enough yet. I'm sure he will in a few more days and will add to the bumps and bruises he usually has.


The weather has been lovely. We haven't yet made it into the Hodhops pool but hopefully that will happen when Guy shakes his cough.

We have been to Cornwall park a couple of times, with the Alexanders then the Englands. Meg followed big bad Ben onto the flying fox and loved it. It's pretty quick! Bevan put the ball into the trees and then decided he would climb up to get it. Seriously. I tried to explain to him that it's a $2 ball and we don't need any more trips to hospital for broken bones! But no, it's a boy thing. The good news is that the kids liked the entertainment and no bones were broken. The bad news was the ball is still in the tree.

x

Hammer time

If flying doesn't work out we are relying on Guy's love of Bob of the Builder to develop so he can build us a bigger house...



If you listen carefully you will hear one of his new words, 'hammer'. It's added to 'bike', 'dark', 'milo' and 'hello'. The 'l' in any word is very exaggerated and greatly practiced.

Lovely weekend here, despite the forecast for rain all weekend. We went to Cornwall park this morning with the Alexanders which was great. Big Bad Ben and Meg had a lovely time pushing each other (mainly Miss Meg being pushed by Ben) on the train and going on the Flying Fox. Quite brave for Meg, I thought. Guy and Sophia were just beginning to acknowledge each other when it was time to go home. Something to work on.

I played tennis for 3 and a half hours yesterday and required an early night after a long soak in the bath! Today I'm attacking the garden and have taken to some of the trees with a handsaw. I suspect my body won't move for the rest of the week...

Sleeping fellow awakes.

hope all are well
T

How super heros learn to fly

It's been a while since our last post and a busy few weeks. I've finished at Minter Ellison, after 6 years. All a bit strange, but straight out of the frying pan and into the fire! I'm doing some work with Kirsten Hodgson (ex Minters) and Nat Davis (also ex Minters) which is reminding me how life is on the outside... consulting.

Meg had a wonderful week at Sarma and Jempa's (my mum and dad's) place in Masterton. She's picked up some delightful new habits and phrases from her big (and small) cousins. What are families for? Guy also had a wonderful few days there, and missed Meg when she stayed on.

Aunty Georgie and cousin Hattie brought Meg back and stayed for a few days which was lovely.

The extended families keep growing with cousin Jo Mac having baby Georgia so a little sister for James.

We are looking forward to a quiet weekend or two and are enjoying the sunshine which has been a rare treat. Pleasingly the Hodhops pool went in recently so we are looking forward to a warm summer in Remmers!

Oh, and there isn't really any update from Guy's health. The dr's letter arrived and still uses words like 'severe' and 'extreme' so a small reminder of the long road ahead. But he'll learn to fly...

More great news

We've got the first part of the bloods back and it's more good news. The enzyme which indicates a diseased heart is 'normal'. This was high when he was in hospital. Potentially this means that he may have had a virus or a 'cause' of the heart failure which has now gone.

So, what this means is that 'recovery' is back on the table as an option. It's still very early days and a long way to go, but there is a chance!

There are more bloods to come back including kidney function.

It is quite unbelievable and I suspect we aren't going to quite dare believe what it could mean, for some time.

On another note that doesn't leave me quite so lost for words... Bridgit and Leah had a fantastic fundraiser last night for Cure Kids and their Auckland to Queenstown challenge. They raised $7500 and plenty of our crowd went home with a few extras, including us - thanks to Mum we have a year's supply of breakfast to share!

In the middle of all of the fun, Bevan slipped in the 'oh yeah, the Dr rang with the blood results'. Apparently kids bath times can be quite the diversion!

Fabulous Fly Guy

We always knew he is a super star!

Guy had his 3 month full check up today and has got some good results. To quote Dr Tom "I don't want to appear too optimistic, but I'm very pleased". Believe me, Dr Tom never appears too optimistic!

How to explain this, when the technical bits are not my forte..? Key pieces:

• His heart has reduced in size (still enlarged, but "not so much" to use one of Meg's fav phrases).
• His liver is significantly reduced - almost can't feel it (I think this means good blood flow).

And the biggie!!:

• His heart contractions have gone from 17% to 37% (the ave is 55%)

So all in all BLOODY MARVELOUS!

We were hoping for maybe some small improvements but expecting probable stability in results so this just proves what a wee champ we have.

To give a fuller picture we need to give blood (well, Guy needs to) which will show enzymes which will indicate the level of disease still in the heart, amongst other things.

I asked whether Dr Tom expects his condition to plateau, continue to improve or slip a bit. There is just no knowing what will happen next but he did say the quote above at about this point. So keep those prayers coming, toes and fingers crossed, love and laughter flowing. I don't care what is doing it but we are working on our own small miracle in Sunny Sandringham!!

Sarma came with Guy and I which was great from a 'what the?' perspective on the medical bits, as well as someone Guy adores to hang out with for a few hours at hospital.

We will have another appointment sometime before Christmas and, all going well, we won't need to in back at Starship (love them though we do) until then.

We saw a few of our friends on the ward, including Hayley who features in an early blog showing Guy how to use a stethoscope. We dropped off some of the CD's to from Rae F to the ward playroom which they were incredibly appreciative of, as they had been to buy some of the Baby Einstein series a couple of weeks ago.

So I'll let you know the results of the blood test if I can understand and translate (though I'm not promising anything).

Take care and I look forward to perhaps a wee celebratory drink tomorrow at the Cure Kids auction with a few of you.
Tessxx

Drugs are Good!

Had our last (hopefully) drug increase today as per usual it was a thoroughly exciting experience. Guy had a few blood pressure issues (low) but they had returned to a normal level by the time we had to leave! The above video shows his physical condition is good, but not his dance moves (think they are mums!). This is Meg's current favourite song, which we had to download especially for her! Hope it's not too loud!

next visits scheduled

As I eat a late lunch and type with one hand (there's the disclaimer in case the boss reads this!) just an update on next hospital clinic visits.

This Friday 8 August - final increase in carvedilol
Wednesday 27th August - Full check with Dr Tom Gentles.

I saw Dr Tom in the hospital this morn as I was getting a new prescription for Guy. He said they will do a full work up when we come in later in the month, which is good.

Those who will be in Auckland on 28th and want a night out let me know (if you haven't already!).

Tess x

a message from Dora

Meg is sitting on my knee and is going to tell me what to say today (she chose the title!).

Guy went to hospital on Friday and had the next increase in drugs. It went well. However, despite what Bevan was told last time, he still has another increase to go. He has put on half a kg which is great, particularly as they are happy it is weight and not fluid. He's now 10.5kg and has his mum's thighs starting to make a comeback! He just looks so much healthier than he did a couple of months ago at 9.2kg and bones...

HFDHHHHHHHHRFYT 6ERT65R465RT4R6RTYRRY5RT5T5TTTTTTTTTTTTTTTTTT
(As I said Meg is sitting here...)

This weekend Meg went to go to dancing, but it doesn't start until next week so she wore her dancing dress all day. Then Meg and I had a special 'mum and Meg' outing to get bookshelves for the kids new room. We picked up lunch from the "nugget shop" (you know the one with the big golden things...) and went to watch the planes land and takeoff at the airport. It was quite fun with the wind buffeting the planes around (fun to be on the ground anyway!).

Today Meg has had another special outting with Aunty Kat to the museum where Aunty Rachel and Cormac were. She's also had a couple of hours playing with Bryn so we are looking forward to a good night's sleep.

Hope you are all well and those in NZ haven't been too blown around by the recent storms.
Tess x

All quiet on the home front!

Who am i kiddin??? if you know Meg & Guy you'll know that that is an un-truth! It is a little more relaxin as their new room was finally finished in the holidays which means they spend a lot of time in there! - see below.

















Guy has been back at day care this past week (Tues & Wed) and has slotted straight back into the routine - he basically doesn't care when you leave. He has been goin nuts over the rabbits & guinea pigs (Bonus - pets at daycare and none at home, just the way i like it!).
We are off to the hospital next Friday for his last increase of carvedilol (beta blocker). It will double his current level of the drug - will let you know how it goes next week!
Bye for now!

A bit too much about me

I had my Dr appointment with Dr Ivor Gerber at Greenlane yesterday. Aunty Livvy came with me which was invaluable as most of the session covered the family tree. Livvy knows all about it (she is married to Mum's brother, John) while I'm a bit clueless how everyone fits in.

Ivor seems pretty convinced that my left bundle branch block and Guy's cardio myopathy are related, though the severity of Guy's condition so young would suggest other 'factors' are at play (possibly mix of genes, environmental or a gizzilion other possibilities). A nice bit of parental guilt to throw in.

Ivor's theory was only reinforced with a number of young deaths from heart issues through mum's family tree (including my maternal grandmother and her brother). We are seeing if we can get coroners reports to assist the discovery process.

It turns out that Uncle John also has Left Bundle Branch Block. Isn't that nice - bonding! His was discovered 16 years and hasn't changed, which is encouraging. Again, the familial link.

LBBB is basically faulty electrics in the heart which "usually indicates underlying cardiac pathology". It may do nothing, or it may get worse and become a serious concern, such as cardio myopathy. Ivor isn't recommending drugs at this stage (similar concoction to Guy) but has said I am free to seek a second opinion. I'm not sure I will, but I'm sure many of you will give me yours (not sure they count as 'second opinions'!).

What now? I've had blood taken which is being tested for heart function - measuring enzymes heart muscles produce (or something!?). We expect it to all be normal, given the minor state of my LBBB. Ivor will also refer us to the genetics team and we may get our blood genetically tested. It is pretty hard to identify genes, but there's a slim chance...

The only (earth shattering) advice Ivor gave was that I shouldn't drink heavily. I probably should also get off my chuff and do exercise... but that sounds a bit extreme to me! Ivor suggested I should be concerned if I wake up tired... umm... who doesn't?! So added the more obvious racing heart, breathless, fainting bits in (go on, sister G, you've already diagnosed yourself!).

Immediate family members can use my notes to get ECG's wanted. The results checked by a cardiologist and send them to Ivor (mine were so small they were dismissed at first). Extended family members - (particularly Pinfolds and Macs) all knowledge of family trees would be great!

Great news - Guy has had a couple of hours at CK (daycare) this morn and loved it. He and Meg are in great form and looking forward to meeting their "4th cousins" (!) next week.

Pictures of Latest Hospital Visit

Another Guy Pinfold masterpiece - amazing use of colours!!!!!!!

Guy is still an excellent patient and after six blood pressure test could probably have done the last one by himself!! In case you are wondering that is not a ginga strip in his hair - it is orange paint!
Hangin out in the waiting area - the house was/is a favourite and kept him occupied for a lot of the time.
The rest of the time we spent in the playroom (painting) or in the cafe - is enthralled by the lifts racing up and down. The lifts are in an atrium are, so you can see them whizzing up and down - gave dad plenty of time to read the sports page & drink his coffee while Guy watched them.

Drugs are good!

Guy's increase went without a hitch this morning so was home by lunchtime. Just one more increase to go for the Beta Blockers. There was no issue getting to the hospital either (with the truck blockade)... in fact it was probably the quickest trip yet!

Have a good weekend

Quick response to couple of questions

Some have asked a couple of questions which others might be wondering about.


If you scroll down to the Xray of Guy's chest taken the night he was admited (a lifetime ago) you can see the large white mass. Well, that's his heart. Needless to say it should be about the size of a small apricot, rather than the whole orchard!

Long term prognosis - it's hard to tell. There are some scary statistics on survival rates in kids out there on various websites. We are relying on medical science doing what it needs to do. It has saved his life many times over just through the drugs that are available now that weren't a few years ago. Quite literally one of them is less than 3 years old and has been his own miracle drug. A few more of those will be great! Some of you have forwarded some really interesting articles through. Please keep them coming if you find them.

What next? Once he's on the optimum drug levels (and the blood thinner / rat poison) it will hopefully be a case of monitoring him from time to time to see how his heart is and keep the drugs going. We'll have to continue to be a bit more paranoid about fever type bugs, but hopefully get him back to daycare a couple of days a week.

If you don't ask... This might be a bit cheeky, but you keep asking so...

Another idea for assistance - some of you will have read on here about good friends up the road Reece (who helped with wallpapering last weekend) and Bridgit (who constantly looks after and feeds our kids and us!) and their 2 kids Bryn (Meg's mate) and Eva. Bridgit and a friend have entered the Cure Kids Auckland to Queenstown Challenge where they have to get to Queenstown on $10. It is a fundraising exercise and they have to raise $7000 by October.

Cure Kids are a supporter of the research team we are linked in with who look at cardiac diesease in the young. They are a great charity who support enormous reasearch into kids dieseases. http://www.fundraiseonline.co.nz/BridgitandLeah/ This is their website. If you have any ideas on how to raise some $ or connections with companies who may donate goods or services for auctions, or just have some spare cash, this is a great cause.

Another cold

A quick update before Guy wakes.

On Saturday morning Meg started coughing at 2am. By 3pm she was exhausted and couldn't talk for all the coughing. I took her to the emergency doctor who suggested she may have the chicken pox virus (some weird spots on her body) and possibly a low grade chest infection. Given Guy's situation I think she was being safe rather than sorry.

Guy and I then headed to the Hod Hops place (Nick and Rachel's) for the next couple of days to try and avoid the spread of bugs. Guy had a lovely time hanging out with the big boys and ate them out of house and home.

However, it hasn't stopped him getting another snotty nose and a bit of a cough - nothing like Meg's was/is... yet. We'll just have to see how things go and see if he's well enough to go into Starship on Friday to up the meds. It would be good if he is as there is still another increase to go, and it's been 5 weeks since the last one.

The carpet went into the spare room today. Very exciting. Thanks to Reece who came to help Bevan wallpaper on Sunday afternoon. They have done a great job and now it just needs painting... All volunteers will be fed and watered!

It will be great to be able to put the kids in there to play and, eventually, sleep.

I hope all NZers are keeping warm in these hideous storms that are keeping us inside. I have taken to using Bevan's 'special' trip for the kids - Bunnings Warehouse playground! (For non locals, it's one of the major DIY superstore chains). It's great - you can get a coffee right beside the playground and there are never any other kids there mid week! Meg took the opportunity to show me the curtains she picked out... mmm. nuff said.

Happy birthday to Aunty George (hope you've recovered from your night out), Jempa (who said is big birthday plan was to move sheep - live it up!) and Reilly for Thursday - can't believe you are 10!! xxx

And to all those who suffer under another year round now... (there seem to be a mass of us).

Take care allx

Holding pattern

Hi all

It's been a while since the last blog mainly because there is nothing to report on the health front. Guy has got over his cold (mainly, touch wood) and has started eating again. I think he has teeth moving so that, combined with a cold and generally just being almost 18months old, all makes him a bit fussy. Unfortunately we don't have the luxury of letting him work his way out of this 'stage' so have been getting creative (and frustrated!) to get him to eat.

There is constantly food around the place which he can snack on (terrible manners which CK won't thank me for when he's back at 'kindy'!). We also have some high energy drink which it is possible for kids to solely survive on. It's been added to "mega milo milkshakes", ice blocks and cooking. Guy has now started drinking in straight which is great. It's seriously sweet and a bit sickly so it's hard to guzzle... but Meg loves it! Ahh well, she'll end up the body builder of the two of them!

All recipes for high energy (which are a bit frowned upon in today's PC anti obesity obsessed world) are greatly received. You know the ones... high cheese, high cream, high fat treats we all had as kids.

Guy's next appointment is 4 July which will hopefully just be a day in the clinic increasing the carvedilol (beta blocker). Hopefully they will also do an echo (ultra sound) and check heart function, though it is likely there will be little or no change. Hopefully no worse though.

Then on the 7th I have my out patients appointment at Greenlane to discuss my Left Bundle Branch Block and the one liner on the Doctors notes about me having Cardiomyopathy (which Guy's doctor suggested is a 'matter of opinion'!).

We are trying to get some videos onto this but are unable at the mo. Will keep working it out.

Take care xx

Friday the 13th!

Bevan took Guy into his hospital appointment this morning to increase his levels of carvedilol. Unfortunately Guy isn't well enough so he has been sent home again. The good news is that he did come home so isn't ill enough to be in hospital.

Meg also has the same hideous cough and has been sent home from CK with a temperature. So Bevan has had them both at home sick. Peachy.

Baking update - while I have a certain reputation as a domestic disaster area, I am delighted to announce that I made the famous Jan Kyle carrot cake.... and it was edible! Thanks Rach for the recipe (which includes "sift flour for mouse shit"!).

Work update - I have resigned from Minter Ellison. I have a 3 month notice period which I will work through (so still here till mid September). I feel relieved to have made the decision. This role is not a part time one and I don't know how long it will be before I can get back full time. It is also a matter of priorities and energy levels...

Have a good weekend all.

Meg's all good

It's been a while since the last update and we've been getting our regular fix of hospital between Fly Guy's appointments.

On Monday Bevan took Guy to the GP as he and Meg have both cold a cold and cough which got worse over the weekend. The GP gave him the all clear then rang later to say it might be best to take him in to Starship A&E 'just in case'. He had no temperature and was generally well (having fun playing on the cars) so came home again. He and Meg both still have the cold and apart from not eating or sleeping very well, they are fine.

Today we had Meg's ECG and Echo. Both are absolutely fine, which is great news and an enormous relief to have got over and done with. The play specialists in Ward 23B were great, and made sure Meg was very relaxed about the whole thing.

Guy is supposed to be in on Friday for another carvedilol increase, though they may not risk it with his cold.

Other things medical... a letter arrived from the adult cardio services about my 'left bundle branch block' that they have identified as being my minor issue from my ECG (what seems like a lifetime ago). There was a comment on it that, because of Guy's condition, they assume I also have cardio myopathy. This seems to be a point for debate, so we aren't taking it too literally. Anyhow, I'm in the system and await my appointment.

Sarma and Jempa have been here since Friday which has been lovely. I even went to see Sex in the City with them last night. My 2nd movie in a month! Dad and I had a bonding shopping experience at Bunnings (DIY mega store), selecting bolts and mouse traps... Have a good trip home x

Collectively Kids recently had a photographer in as a fund raiser...




The photographer asked if she could use Guy's photos in her portfolio... his first modelling assignment! You can see he was doing his trademark shuffle to the music in his head... Meg warmed into it and had Piglet to help her pose.

That's all for now. Until next time, keep your news coming. Tx

PS Auntie Kirst I can't wait to see the next great flower arrangement. Remember movement...!

Dad Chimes In - At Last!!

Kia Ora All,
Here a a few shots from today (Queens Birthday- got to love the Royals!) on another typical sunny Auckland day. A fairly busy day with myself doing some dodgy plastering in the hall and the soooon to be completed spareroom/kids room/ playroom - if Tessa decides how we are going to use it! Tessa cut Meg's hair (quite a good job!) & Guy cut the lawn - the photographic evidence of these events will be published in the next instalment!


We had a visit from Moira who entertained Meg and Guy with her impersonations of a Dr (Damn no shots of that!) and also helped make some chocy chip Anzac biscuits. Guy spent most of the time trying to flick the ingredients out of the bowl and Meg was more interested in eating the mixture raw than cooking it. We did however end up with a large batch of tasty morsels - thanks Moira!



Noos and Dave also popped in for a quick visit - Dave updated himself with the weekends sports results and Noos showed us a picture of what Guy's xray might look like maybe/possibly??
Hope you enjoyed Indie!














Ward 23b
Finally found the shot of Dr Guy - It shows that the nursing staff (Hayley) are gifted tutors, creative in their attempts to lessen their workload and not above letting patients self-diagnose. See ya next visit!

Home again

Hi, we are home again. I'm delighted to say we were only in hospital for the day on Friday and were able to leave by 7pm. Guy has tolerated the increased dose of carvedilol. We will be in again every fortnight on Friday's for increases. All going well this will only take 2 more visits for the carvedilol.

I had enough time to pin down doctors for masses of questions (mainly raised through doing my own internet research), the dietitian to check about how we can get Guy to gain weight (a massive list of what you would normally think of as 'what not to eat'), and the team who are looking at inheirited cardiac diesease in under 35yr olds (the 'young', sigh, we no longer qualify...!). More on these another time.

Just wanted to let everyone know we are home and doing well.
Tx

Starship here we come

Guy and I will be in Starship for 24 hours from tomorrow (Friday) morning to increase his level of carvedilol. We will then be in every fortnight on the Friday to increase until he as at his optimum (I have no idea what that is yet) and, I assume, on the Warfarin (sp?) blood thinner (aka rat poison...).

I've been doing my homework online with UK, US and Australian cardiomyopathy websites which have been very informative and have loaded me up with questions for our medical team.

Heart Children are having a family day on Sunday so we may go along.

Aunty George, hows the ankle? Cousin Reilly, hope you feel better soon. So good to see the rest of the family extracting value from the health system.

NZers have a great long weekend and drive safely if you are on the roads.

Tuesday

We had another lovely weekend with lots of visitors including the Afflecks from Gore, Timmy and the girls; as well as visit to Cormac's place, and a walk up to Meg's old daycare, Minimarc, for the bouncy castle with Bryn and Eva.

Here are Meg and Bryn on the slide at the park

and Guy, Charlotte Affleck and Meg on the deck.

We are still waiting to hear when our next hospital appointment is. In the meantime Guy is in good form. He wonders why he has to go back into the highchair... but you get the idea...

Lots of good news and things happening the week - beautiful Bella from Wellington gets to go home tomorrow from Starship. Her mum, Maxine, and I went to the movies on Saturday night to see Second Hand Wedding. It was a great watch. We'll keep in touch and hope they have a great trip home. Bella might get to have her 1st birthday party after all.

Heart Children have their appeal on (fantastic cause if you are looking to give) and you may remember I mentioned the heart stopper plunge where you have to get into an icey bath or pool for 5 minutes. I'm delighted to say the Auckland event is over subscribed so there is no room for another team... maybe next year!

They have other fundraisers including the heart kids who do the last 5 kms of the Round Taupo challenge... yes, those littlies who always blat past me on the final stretch. I think we might put a team or two together this year and raise some cash. Let me know if you are interested in cycling or sponsoring.

Heart Children also have a family day this Sunday which we will go to to meet some other parents. Unfortunately there are no other families with Cardiomyopathy registered in Auckland, but we all have the dickie tickers in common.

We've been hearing about some amazing research which is going on and, in talking to the Heart Children co ordinators, medical solutions to children with heart problems has improved enormously. I'm keen to get into non traditional medical areas to work with the drugs to give our wee man the best possible outcome. All ideas welcome!

On a more personal front - congrats to Monty and Sarah, such great news and we look forward to seeing the ROCK! Cee and Pete Motion are almost home - yah! Have a safe trip back. Can't wait to see you.

Monday visiting

Meg and Guy went and visit Lou and Imogen O'Rourke this morning, with Dad.

Check out Mr Casual, who just about needs his first haircut...

Thursday 22nd

Today is Guy's 16 month old 'birthday' and has been my first day at work. Both seem to have gone well, bar the pounding headache I now have!

Apart from a small reaction where the new cocktail of drugs bugged Guy's tummy a bit, he is doing really well. He's getting very cheeky and needs to get back to daycare to learn some manners! We've had brief stints when dropping Meg off and picking her up where Guy has gone back to say hi to his buddies at CK. Generally he flirts, sits, eats and leaves... sound like a boy?

We are awaiting the next appointment at Starship to up the Carvedilol from 0.45ml doses. Probably next week sometime.

Top Tip Thursday

Does everyone know about ICE numbers for your mobile phones? It stands for In Case of Emergency and is what ambulance crews look for should you collapse. They DO look so please, if you haven't, make sure you put them in. You can have ICE 1, ICE 2, ICE 3... etc in case they can't contact your first person.

This is a UK initiative that has gone global... so wherever you are.

Take care
T x

PS Meg is learning Thomas the Tank Engine in Mandarin and she doesn't even know it! Thanks Zara!

Sunday night

Guy is now on his latest medication - Cardvilol (or something!) - a beta blocker. We had our 24 hours in Starship getting slowly onto them. guy loved the attention and was treated like the returning hero by the staff on 23B. Apart from a small glitch where he fell off a chair in the play room minutes after having his first dose, bringing nurses and doctors running, he was fine. Turns out he was just being a bit uncordinated (I know, hard to believe of a child of mine...) in his dismount, rather than his blood pressure dropping through the floor.

Never short of an excuse to flirt, Guy managed to find himself a new girlfriend while we were in - 12 month old beautiful Bella from Wellington. Bella has the same condition - cardio myopathy - and has been in Starship since last Thursday. Her family are looking the way I'm sure we did in the first week. I've been in to see them again today, and to drop off some of the meals we still have from all the fab cooking friends have done. It's nice to be able to compare notes and know what they are going through. We are going to keep in touch and form our own support group :)

So, next step will be to increase Guy's drug dose which will require another day in hospital, but the doctors have given us a 'week off' so we're not sure when that will be. This week I'll be following the glitches in my ECG to see what that all means...

Have a good week all x

Beatson's - I have no way of contacting you (keep forgetting to get email address of those who have them) but thank you for the fab package!

Thursday

Here are a couple of shots of Guy and Meg. Guy loves climbing and there's no chance a dickie ticker will slow that down (unfortunately!). Note the new hall cupboard... Meg and Guy have matching Woody jammies and Meg insists they both have to wear them (at least it has got Meg out of Eva's old High 5 pj's long enough to wash them!).

Off to hospital in the morn for the night to get on beta blockers. Guy's not had such a good day, and was sick and off his food a bit so it seems he is coming off the wonder drip. Hopefully he is still well enough to get onto the BB's without too many probs.

We dropped in to Collectively Kids (daycare) to pick up Meg. Guy loved being back there, if only very briefly, and wasn't keen to leave again. We look forward to being able to give him that normality again as soon as possible.

Wednesday

Update from Starship clinic appointment
We had the appointment at Starship's Heart Clinic today and it went as well as it could have. The good news is that there has been no decline in Guy's heart function, or any other clinical signs, since we left hospital. The Drs are (as we are!) happy with the fact Guy is well 'within himself' and is bright and happy and eating well.

So, we are home again with drug number 5 to add to his tasty formula twice a day - spironlactin (?sp - did I mention how crap I was at chemistry, and spelling, at school?!).

As expected the plan is to introduce new drugs over the next few weeks. Each has its own challenges and risks but is important to be on. The other good news is that Guy won't need to go back onto the levosamenden drip just yet, as he isn't feeling miserable again (the week to 10 day slide). I gather that means we can 'save' the 2nd possible use of it for a rainy day.

We will be back in ward 23b on Friday for at least 24 hours as they introduce the next stage of drugs - beta blockers. The side effects can be pretty miserable so Guy will need to be monitored closely. All going well he'll get slowly, straight onto them. If not, they'll try again in another week or so, and possibly with the help of the 'rainy day' levosamenden.

Once the beta blockers are in place we need to then look at another blood thinner, which I have forgotten the name of but is common for adults who need such things. With a large heart chamber it is important that he is on a thinner that is better than the asprin (apparently!). Again this is a very tricky one to get right, particularly is such small people as Fly Guy, so will be another hospital admission and careful monitoring.

Other good news is that it is not unheard of for children to get improvements in their heart function just on the heart drugs, even if it isn't viral. On the 'cause' they are doing more investigation and aren't yet convinced that it is genetic. I still will hear from the cardiologist about my abnormality at some point and Meg is booked in for an echo and ECG in June.

Many many thanks
Rach Butterick has been a complete star and came to stay from Sun - Tues and has done dishes, washing, folding, entertained kids (and even changed a stinky Guy nappy, much to her disappointment!). Thank you so much Rach. I hope I never have to return the favour in the same way - looking after a family of 6 could finish me off! But we certainly owe you hugely.

When a Kyle carrot cake comes to town, the old school crew crawl out of the wood work! Seriously, it has been wonderful to see Cat, Kirt, White, Nic and Luce here.

Sarma is back in Auckland as is "Grannie Helen" (sis in law Rachel's mum, and we have seen "Grand Dave" this week). So Meg and Guy will be thrilled, not to mention the goodies that have come with Sarma.

Messages, food and parcels continue to come from around the country and the world and we thank everyone so much. We know that Guy is doing as well as he is because of all the positivity and prayers we are getting. Thank you all. It is incredibly humbling.

Final note of possible madness...
As Aunty Rachel mentioned it is Heart Children's appeal week. Please, if you can and would like to, give to this. They have been a great support for the 3 unfortunate weeks we have had exposure to them.

Alternatively we may be taking the heart children plunge into icey water next week for sponsorship. I barely swim in the heat of summer so I'll be looking for generous dontaions! Watch this space. We are looking into this... we may even rope some of you into it... Reece?

take care
Tessx

Monday

We've had a great weekend with Guy and Meg having lots of fun with lots of visitors.

On Saturday afternoon we had our CPR training organised by Heart Children, free for heart families. It was great to do and I think everyone feels much more informed about what the latest practices are for CPR and choking in children and adults.

The kids watched DVDs and the adults (plus Reilly) were educated. Thanks to Rachel and Nick for the catering and Reece, Bridgit, Noos, Dave, Moira, and Kat for giving up a few hours on your Saturday night. It felt wonderfully normal as a 'pot luck' dinner as well.

On Sunday Rach Butterick and Cat Williams were delivered from the airport by Lucy Hall. We had a great gossipy lunch and caught up with the school reunion photos while Meg waited for Sam to arrive... Cat taught Meg to play noughts & crosses and 'hangman' (yes Meg is only just 3 and didn't catch on). Rach has been doing what Rach does best for the last couple of day - being incredibly helpful and keeping us fed and watered. Thanks Mike for letting her come away!

Nic, Louise, and Gimmy O'Rourke have been over today and Guy and Meg have loved it. Guy's eating almost normally which is wonderful. He is just getting more and more energy and happier every day. We don't seem to be yet seeing any effects of the levosamden wearing off (it's been over a week and it should last for a week to 10 days).

Wednesday's appointment is the next medical milestone and we'll know more then.

Bevan has been busy building a storage cupboard in the hall so can't wait to have it finished and, after 5 years, have a linen cupboard. Next DIY project is to get the big spare room finished and get the kids, or at least their toys, into it. Going forward we may need Guy in his own room.

Thanks for all the messages, they are lovely to get. We hope you are all well.
Tess

Friday check up

Very quick update for today. Guy has had another great day on very good form. We've had a quick 0chec0k an0d the 000000000000000... Guy's helping me type this...
The Dr is happy with how he is, no real chenge since we left hospital but his heart rate is down, which is great (around 110-115 from his previous 150ish).

They've taken blood and we'll get the results next Wednesday, I guess, when we have the next clinic appointment (with Dr Tom Gentles).

Clinically they might not see much of an improvement, but we certainly have. He's giggling, smiling, chatting constantly, and even feels well enough to give his big sister the occasional 'don't argue' (as Bevan calls it - a big shove in the chest). He's little though, at 9.2kg, still a very sick wee man, and his heart and liver are still enlarged.

Levosamenden (phonetic spelling!) is the drip which I have mentioned previously, he was on last week for 30 hours. It's a bit of a wonder drug and we are likely to see some decline in his health early - mid next week. Horrendous, but at least we have been warned. It is very possible they will give him another dose of it next week. Unfortunately it seems it only works twice, if you are lucky. What we hope is that they get all the other meds working full steam to have him feeling as well as possible, and a bit of a miracle wouldn't go astray...

S'all for now. Vincents are online for Skypeing... could be chaos!
Tess x

Welcome Home Guy

The Pinfold Hodsons had their first night together for two weeks last night. YAY! Apparently, everyone slept through the night! Meg and Guy woke up giggling and chatting, loving being back in the same room together. Cormac and I have been round for a visit in the lovely warm living room this afternoon. Guy ate avocado, ham and yoghurt for lunch (tiny amounts, but still good progress). Taking his medicine was a bit different. We gave Cormac some water on a spoon which initially made Guy take his from a spoon. But he is an intelligent chap and caught on quickly. After the first spoonful, no amount of Cormac pretending would convince him to take any more. So it was back to the syringe. As an observer I can let you know that this will be a VERY stressful thing for Bevan and Tess to have to do multiple times a day.
Bevan took the photo of the two boys in the hallway. The other photo shows the joy of doing something normal like putting both children into their PJs together.
What can we do to help?
As extended family and friends, we all feel that we want to be able to do something to help make a scary and stressful time easier. Having you read this blog is a real support to Bevan and Tess. They are also really appreciative of all the practical help you have been giving and the cards and letters of support.
Unfortunately, they had to invest in a lockable mailbox last week. They had parcels ripped open and things taken off their doorstep... I will leave you to form your own view on the particularly vile human beings who do this. You can also send parcels care of Nick and me at 18 Lingarth Street, Remuera, Auckland, New Zealand. We have a big scary fence and secure front porch!
Apart from your prayers, I thought I would give you some ideas of really helpful things you could do:
To help Bevan and Tess themselves:
- Hanging mobiles, wall stickers, glow in the dark stickers etc for decorating Guy's soon to be refurbished new bedroom (re-insulation and non-allergenic carpet being done soon). If Guy is in bed, he likes looking up at the roof and the things around him.
- Vouchers for petrol, hardware, groceries or the chemist. Thanks so much for the petrol vouchers already sent, at $17 per day parking at Starship, not having to pay petrol makes a difference.
- Regular emails and texts of support.
- Meals when Guy is in hospital. So many fabulous people have been on dinner duty over the last two weeks. We need to keep mummy, daddy and Meg as healthy as possible.
To help Starship:
The Cardiac ward at Starship is a sobering place. It is full of shellshocked parents and very ill children fighting for their lives. When Guy is there he is not allowed to leave the ward to use the facilities in the rest of Starship. There is a playroom in the ward where Meg and Guy have enjoyed playing games and making art. Aunty George and Sarma found the "playroom wish list" and have already started sending bits and pieces to ensure that over the coming months/years when Guy is there, he and other children have lots of activities to do with their parents and friends. You can send items for the playroom - paper, coloured card, stickers, felt tips, glue, glitter pens, paints, balloons, games, puzzles, felt shapes etc. They also need a baby jolly jumper and the little bubble machines worked really well for entertaining Guy.
To help Heart Children:
Heart Children New Zealand (www.heartchildren.org.nz)is a voluntary organisation that provide education and advocacy as well as ongoing emotional and practical support to help families when they have a child with chronic heart disease. They visited Tessa and Bevan every day in hospital, gave them literature, information about parent groups and petrol vouchers and they are providing the CPR course this weekend for family and friends at Tessa and Bevan's house. They rely solely on donations and their annual appeal is currently underway.

Big e-cuddles to our darling Guy and a special e-hug for his his brave parents and beautiful sister. We love you.
Aunty Rachelxx

Home Visit!

Today we had a great day with Guy allowed out of the hospital for the afternoon to come home and hang out with Mum, Dad and Meg. Uncle Nick popped out of work quickly to say hi and see Guy return to chewing green tomatoes off the plant. It was a great day and so lovely to have him back in our normal surroundings. Not to mention having us all together at home for the first time in two weeks.

As you can see he quickly got back to claiming his spot on the kids couch.

Last night Bevan and I, with CD and Matt, went to the VERY LOUD Foo Fighters which was fantastic. I didn't know all the songs, but didn't let that stop me yelling myself hoarse. It was great to do - thank you so much Noos and Moira for babysitting while we were able to get out, the nurses for insisting we did, and CD and Matt for having a great time with us! I slept very well in the hospital, unable to hear the helicopters landing or Guy's sleep talking, for the ringing in my ears.

Guy has started a new drug, dijoxin (phonetic spelling), which is yet another heart contractor, but this one slows the heart as well. They are likely to give him another dose on the drip drug that I can never remember the name of that only lasts a week. So we are still in hospital for at least the next week or so, but hopefully with more, possibly longer, visits home over the next few days.

Cardiologists are also looking closely at my ECG to see if I have something genetic which may have passed to Guy and worsened somehow and be causing the issues.

Heart Children have organised a CPR trainer to come and see us and those likley to be looking after Guy, on Saturday, to give us all a course. There have been recent changes to what is recommended so I urge you all to get up to date :)


Meg checking out that the ECG team have all the leads in the right place...


Guy really needed a bath after 2 days of being sick and stuck to his bed, even he knew it. No idea where he found this, such is his familiarity with the ward.


Cuddles and dancing on the bed with Meg to yet more "Love to Sing"


And yet more walking Zeb

A few photos of Starship life

This is Aunty Rachel, posting some photos from the hospital. Meg and cousin Reilly made a little "car" out of a cardboard box. We put a pillow in it and Guy can ride around the ward in style. When he is not hooked up to a drip, one of Guy's favourite pastimes is being taken for ride in the stroller, or taking his "Zeb" (toy zebra) for a ride in the toy stroller, up and down the corridor. He loved doing this with cousins Harriet, Ollie and Will last week. When he is restricted to the bed, blowing bubbles is a great distraction and batting the Eeyore balloon Aunty Noos gave him is also a fave. Guy also has a portable DVD, which he likes to watch with Meg sitting beside him (I think any new DVDs on loan would be appreciated by parents a bit sick of "Love to Sing" !!!). Mummy or daddy can also sometimes take Guy for a little walk pushing the drip machine with them. Like the photo where Bevan is blowing raspberries for Guy, we have seen him smiling and giggling quite a lot - he especially enjoyed waving out the window to Aunty George and Uncle Nick when they left the ward at night last week. He has always been a smiley, cheeky baby and his cruisey, flirty nature belies his current heart rate of 140-150bpm (it should be about 90 and it will get back there.)Big e-cuddles to Tess, Bevan, Megapixel and "Babbee Guyah" (Will's name for him) and thanks to everyone for keeping the support up from around the country and the world.