heartkids family

Chelsea update + I'm closing this blog...

Well here is our little heartkid Chelsea. FULL to the brim with life, spirit, cheekiness, hungriness, creativeness, feistiness and lots of other 'nesses too!

Its been such a long while since I have updated this Heartkid family blog so I thought I would finish with one last quick post and then formally close it off!

As many of you might recall, Chelsea had her last open heart surgery in Melbourne RCH when she was 9 months old.  At that time her cardiac surgeon [the lovely Frenchman Yves] said that he felt it was a good repair. He said there was a small leakage with one of her valves but that she could in fact be good for a little while or even a long while.  

I think it was around 12 months that she came off her medications and I can report that to this day she is medication free.

At each new annual cardiac appointment she's been reassessed and an update on the likelihood of surgery for the future has been discussed. At 12 months it looked as though we may not have to worry about surgery until around age 5 or so.

At 2 years we were told that she could actually be fine until her mid to late teens without surgery.

At 3 years we were given the news that in fact she may not ever need any futher surgery!  Can you imagine receiving that kind of news? To think when we were first diagnosed - in utero - that all I wanted was to just keep her, no matter what condition, I already loved her so much. Wow, what a road we have travelled!

These days, we still have ongoing appointments for Chelsea in a few areas.  I booked her in for a speech assessment as her speeh was different to that of her twin but turns out, it was in fact just different. She was assessed as having completely normal speech development for her age. These days she amazes us with huge words popped into her sentences.  She's really quite a character.

As well as cardiology, we have ongoing checkups with an Opthalmologist for her eyes. Cheslea has Duane's Syndrome which means she's either missing or has a damaged optic nerve to the side of one of her eyes.  Hers is a mild case, which we are thankful for but they are keeping a close eye [pardon the pun!] on her to make she continues to develop good straight forward vision. She will most likely need glasses at some point and will need to sit front centre in the classroom in the future.

We have also been investigating the outfall from Chelsea's bowel surgery when she was diagnosed with necrotizing enterocolitis at 5 days old, which to be blunt, nearly killed her. She survived obviously but did need a large resection of her intestines, also in the first year of her life. So after being on the cardiologist/ paediatrician / WCH gastroenterology circuit for over 2 years, we have been going through some testing and looking at coeliac disease, short bowel syndrome, lactose intolerance etc etc... not fun!  But I'd certainly like to get it all resolved by the time she starts kindy next year.  Poor little darling, as if she hasn't enough to deal with.

Anyway, I wanted to mention some of these things for families who may have found my Heartkids blog as often babies with heart complications have other stuff to deal with also. All minor in comparison but nevertheless, issues to work though & deal with on a daily basis.

But as Chelsea will be starting kindy next year and I don't necessarily want to discuss the nitty gritty of all her health details, she deserves her privacy too, I have decided to formally finish & close this blog.  I have transferred most of the history so families googling heartkids etc will still find the information on my other blog which is all about:

• family life in general
• my arty stuff, technology, Blythe collecting etc
• heartkid updates should there be further developments on surgery/treatment

You can find my personal blog,  "Something for Kate" here.

And to finish off, here's one last fundraiser to share on this blog...

For the month of September 2011, I will be donating $10 from every print sold, to Heartkids for their Cuppa for Heartkids campaign.

Here's my print!

You can also see our tiny Chelsea is one of the faces on Heartkids Australia's page promoting Cuppa For Heartkids right now. See her beaming smile as she proudly shows off her zipper at 9months after her second open heart surgery! She's now 3 and running around like you wouldn't believe. Smiley, cheeky & naughty. Love love love her spirit!  

You can read her humble beginnings on Heartkids Australia website, 3rd story down. 

 

The print can be purchased through my online ETSY store here!

Be quick, only 5 days left!!  

I want to thank all the families that have supported us & those that found & read this blog because they too have their own heartkid journey.

We are so grateful that all our prayers have been answered and I wish from the bottom of my heart that all those little precious heartkids from here and into the future will have the best possible outcomes. 

Love & strength,

Kate xo

 

poster family for ikea...

nah, just a fundraiser for heartkids [ikea are the major sponsor in SA], held a few weeks back.

a gold coin donation to have our pic printed for the front cover of their 2010 catalogue!  cool huh?

kate

xo

cuppa for kids event + more prints...

 

I've had such a great response to my heartkids cuppa for kids fundraiser that i decided to get more prints printed!  i have now listed them in my etsy store for internationals.  australians can email me direct [reduced postage].

i held my 'cuppa for kids' event at my house last week for a bunch of local lovely Adelaidian ladies.  some nice chat, food & coffee and all received a happy heart babushka print.

some wonderful dollars has been raised for heartkids, THANK YOU!!!!!!!!!!!!!!  and more coming with future print sales too.

kate

xo

City to Bay wrap up...

Yippee! We made it!!!!!!!

The finish line AND our $1000 fundraising for Heartkids Target! Yay Team Mason6!!!!!!!!!!!!

A huge huge thank you to all our extremely generous sponsors. And to you mystery $100 donor who got us over the line THANK YOU - who are you? I can't thank you personally so please know we are so so so appreciative xoxoxoxo

A record 29000+ entrants for this years City to Bay Fun Run/Walk. We loved it & plan to do it every year from now on. Good on you Adelaide - a fun family day!

Some serious $ made for Heartkids today & very much needed. Not sure what the final tally was but the Heartkids team totalled more than 500 entrants & over $20,000 raised. Really terrific.

Just updating to add some more pics from the day....

Team Mason6; well some of us anyway. All of us + my sister + my niece + my cousin. This was us down at the reserve after the race. Enjoying entertainment, food from the Heartkids tent & a beautiful day....

Jane, Shannon & Victoria @ race start.

The girlies in their prams.

Miss Chels herself in her new "Dorothy Dinosaur" hat. These Pumpkin Patch jeans have been passed down from Georgia to Charlie, to Amelia and now Chels is wearing them. Nothing like a great pair of jeans and these have super cute style. Anyway, the knee had worn through and needed to be patched. I thought of the heart patch the night before the race. Now feeling somewhat guilty for branding my beautiful little heartkid but it wasn't intended that way. It was intended that we [heart] her. It won't be long until Amelia's PP jeans will wear though so will match her patch with these ones.

Miss giggle pot Amelia. Note Heartkids tattoo! The first tattoos my girls have ever had. What a pain to get off huh?

Miss Georgie Porgie who loved the entire day.

Miss Charlie who was a little overwhelmed with the crowds at times.

Right at the end of the day, the cracks were appearing. Twins wanted bed, George & Char, ready for lunch and rest at home.

Kate xo

Cuppa for Kids NEWS

Well I mentioned some time ago here, that I would be holding a morning tea @ my house to raise very much needed funds for Heartkids SA.  Time has escaped me these last two months but I am almost ready to spill with the final details.  

Cuppa for Kids is a nationally supported campaign for Heartkids.  Its endorsed by the Australian Prime Minister and many other notable celebrities, politicians and sporting greats.  You can visit the official website here.  There are lots of great free recipes offered up for you to try too!  Check it out!  You can read several Heartkid stories which aim to create awareness of children with  CHD - congenital or acquired heart disease.  And guess what, my little Chelsea's story is right there on the national website too!

Did you know 6 babies per day in Australia are born with a heart condition?  Adelaide families have no option but to travel to Melbourne for life saving open heart surgery for their babies and small children.  You can imagine the costs of flights, accommodation, local travel back and forth to the hospital every day, when you are stuck interstate for sometimes weeks, waiting for your baby to have this life saving surgery, and then throughout the recovery process.  

Jeff, myself and all our girls spent 5 weeks in Melbourne for Chelseas two open heart surgeries last year.  Thats a whole lotta moula!  But we feel very fortunate that we both have jobs and were able to slowly pay back that large tally accumulated.  And of course we would have given up everything if required to do it again and again and again. But even more than that, we got to bring our Chelsea home.  Some other families are not so fortunate.  All that pressure, emotional and financial at the time when they are at their most fragile.  Can you imagine?

CHD is not going away. More research into extending CHD children's lives and fixing these tiny little hearts needs to be done.  Families in crisis and children with bleak futures need support, both emotional and financial.  I guess thats where the 'Cuppa for Kids' idea came in.  

So I wanted to host my very own Cuppa for Kids and I came up with the idea to not just offer a cuppa & cake in exchange for fundraising dollars but to offer something a little extra.  I want everyone to feel good about helping Heartkids and offering a little money.  I want it to be a win win for everyone.  So here's the deal...

FOR LOCAL ADELAIDIANS:

The cuppa morning is scheduled from 10am Tuesday 22nd September.  Basically, I'll have a little morning tea @ my house [which may well turn into a drop in centre/open house all day thing!], costing $15 per adult, which will include yummy morning tea, tea/coffee etc.  Pretty good deal?  But wait, there's more!  Each adult will receive a high quality professionally printed A4 print of my HAPPY HEART BABUSHKA artwork.  Please email me for more details and to pre-order your print.  

I would love to see friends old and new, old scrapping buddies, and meet some new people too!  If you have little kids, they are more than welcome to come and play with mine.  email me & we'll chat! xo

Bookings are essential.

FOR ANYONE & EVERYONE ELSE:

I'll be selling my HAPPY HEART BABUSHKA prints for $15 which will include postage to anywhere within Australia.  email me to pre-order!  

Overseas peoples:  I would love to include you too so we can work out some sort of economical postage deal.  Just email me.

Minimum $5 from every print sold will be donated to Heartkids.  

Hopefully it will be more, depending on printing costs.  Obviously the more prints that are pre-ordered, the cheaper the cost to print, & the more dollars I'll be able to pass on to Heartkids!!

So anyway, here she is, MY HAPPY HEART BABUSHKA.  

I am currently preparing her for pre-press right now and hopefully she'll be at the printers early next week.  I have framed the original in one of those IKEA RIBBA frames [$17] and it looks impressive [if I don't say so myself!] so I'll take pics of it framed in good light over the next few days to share.  I created this for my Chelsea's bedroom and she of course is my inspiration.  She is my little HAPPY HEART girl.

Even if you weren't helping me to help Heartkids, an A4 high quality print for $15 is a pretty good deal, isn't it?  Make a good & unique present even if you don't like babushkas yourself or don't have a daughter, wouldn't it?  I hope you will join me so we can all do a little something to help these precious heart babies and their families!

Thank you SO much and I appreciate the wonderful response I have had so far!

Kate

xo 

PS.  If you are not familiar with the background and why I've become passionate about fundraising for Heartkids, rather than go back right through this blog to read about my Chelsea's journey, you can read a condensed version below!  This has been published on the national Heartkids website and also printed in the state Heartkids newsletter. Kate xo

Download Chelsea story flyer

we need YOUR support!

Jeff and I are entering the Adelaide City to Bay 3km walk along with all our girlies in their double prams in order to raise very much needed funds for HEARTKIDS!  - A charity of course very close to our hearts!  

If you are a recent visitor here, you may not have followed our journey with our littlest daughter, Chelsea, through her first traumatic year of life with 2 open heart surgeries and a multitude of complications.  

This year’s City to Bay Fun Run is giving our heart kids, their families, friends and colleagues the chance to get “on your marks for little hearts" in support of HeartKids SA. We are proud to be raising the much needed funds and awareness for the brave infants, children and teens who are affected by Childhood Heart Disease, like Chelsea. 

A phenomenal 2-3 South Australian families are required to travel to Melbourne each week for their child to receive life saving surgery, which often causes a huge financial burden on them. Please help us reach our goal to raise funds for research, the Travel Assistance Fund, playgroups, teen camps, and allowing us to offer a Family Support Co-ordinator for our families, just like ours!

You can see our official fundraising page here at 'EveryDay Hero' and donate by just clicking on the little SPONSOR ME widget just at the top of the next column here on our blog!

Thanks so much dear readers, every little bit helps these precious miracles survive and provides support for their families!

Kate

xo 

cuppa for kids!

i have been dreaming up a little idea to not only host a little 'cuppa' event here at my house for Adelaidians [probably August], but i am thinking about how i can make some extra money for heartkids too.  

i am planning to create an original collaged 'heart' babushka artwork for my chelsea blossom and then sell high quality prints cheap, online through my blog and through my etsy shop with profits going to heartkids!  SOooooooo, watch this space and i'll be back in July with details!

if you are not familiar with my new art making ventures, you can visit me here.

you can also read more about cuppa for kids here.  check out the stories, there's a condensed one about our chelsea!

kate

xo

another milestone for chelsea...

 

finally took her free standing first steps today with all her sisters, jeff and i cheering her on, again, and again, and another 10 times more after that!  so she has officially started walking!  baby steps, but nevertheless she's on her way!  yay for you chelsea blossom!!!!!!!  you amazing little chicky.  we are SO proud of you!

in other news, we had chelseas cardiology clinic appointment last week and she was really quite relaxed.  

i brought a wiggles dvd in with me for her to watch while she was having her echo & ecg and made sure she didn't have a morning sleep.  so apart from trying to pull the technicians hand away, she didn't cry and she quite content to lie back, have a bottle [which i normally don't allow anymore until nap time] and just watch the wiggles 'go bananas'.  quite a change since her last cardiology appointment 6 mths ago when she was extremely wary and quite anxious about any sort of medical interference.  understandable of course but anyway, she has come a long way.

her saturation levels were excellent - 99%  woo hoo, that's pretty normal & perfect!  her cardiologist after looking at the scans also told us that despite a leaky valve and another small vsd [hole in the heart], she would probably not be requiring any more surgery until chelsea was 5 or 6 years of age!!!!!!!!!!!!!  BEST NEWS!!!!!  and we only need to attend clinic twice per year!!!!!

i had been a little worried the last few weeks as our appointment was approaching, in case the news was bad.  in case her test results showed that she would have to go back for more surgery this year.  we have been living in perfect bliss with a happy and healthy [relatively speaking] chelsea since october last year.  i so did not want to give up our precious life and head back to the slicing table any time soon.  i desperately wanted chelsea to have more years to develop strength, confidence, a boosted immune system etc etc before having to go through all that major trauma again.  i know the time will come for the surgery and quite possibly it will be even harder because she will know what is about to happen and she will remember afterward. but to have a few years before the next one is due, really is blissful.  we can almost forget, while she's well, and live normally, just enjoying each other.

chelsea continues to see her chiropractor every 6 weeks now and he is happy with her progress.  we are seeing a paediatrician every 6 months now too just so that he can look after her in a holistic sense.  obviously cardiology will look after all her heart health but there is often other issues to deal with and a paediatrician can make sure her total health is on track and she is developing well in all other areas.  she's also been referred to an ophthalmologist, who we'll see in a few weeks.  once of her eyes turns more slowly that the other so we are getting that checked out too.  

so our little trooper is fighting fit and now taking some big steps.  i'm so inspired daily by her.  she truly is a gift.  of course so are all our children, an amazing gift, but to be parents of a child with a life threatening heart condition, well i can only say, we appreciate her, our other children and our life so much more because of the experiences we have had. we feel so lucky.  really, so very incredibly lucky.

kate

xo

Australian Heart Kid of the month!

Yep our Chels is the Australian 'heart kid' of the month!  Read her condensed story here.

kate

xo

Blossom update!

Well a few months ago, I guess a couple of months after Chelsea's last open heart surgery, we started making enquiries about her mobility, or lack of it in comparison with her twin.  We knew absolutely that she couldn't possibly be expected to be at the same stage considering her 3 large surgeries last year, including 4 chest opens and a large bowel surgery.

Anyway, Chelsea is seeing a physiotherapist, our chiropractor and in January started baby swimming lessons.  We have been working with her daily doing exercises, stretching mainly but also forcing [for want of a better word] her to do all the things she doesn't like to do.  She had to go back and learn rolling from side to side, getting up to a sitting position from both back and then tummy and also the eventual learn to crawl.

She has been sitting up for such a long time so she hated having to go back to those baby positions.  She has been very protective of her chest and we have been most protective of her getting distressed.  We never forced her to do anything.  Well all of that, including poor muscle tone in her hips and upper body has resulted in her taking quite a while to crawl.

For probably the last month, she has really improved with rolls to sitting position accomplished and also a combination of bottom shuffling, rolling, reaching and spinning around seeing her get to almost anywhere she wants.  

Today she crawled, really crawled!  We are just so proud of her as are her adoring sisters.  We clapped her every time she crawled from one 'team' back to the other.  She loves an audience our Chelsea so was quite proud of herself and encouraged to keep going.

A big milestone reached.  

She still has lots of strength work to do but I have full confidence that we'll get her walking by year end.   Delayed yes, but only gross motor.  She can catch up on all that.  Fine motor and intellectual development is going beautifully.  She and Amelia are both developing well and are starting to do all sorts of funny & clever new things all the time.  My precious babies.  Such a great age & stage!

Kate

xo