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,