My 3 sons

[aussigal]

Had a little visit to my GP/PCP today to get the results of the boys echo's formally

Matt has bicuspid valve and coartacation(sp?) ad a 3.5 aortic-root, needs referring...
Ben has both mitral and aortic mild regurgitation and needs referring,
Steve has a bicuspid valve and I forgot to take note of the rest of his report.

I will go back and get the copies of these tomorrow as I want them for my own notes...

The three boys will be seen by Luigi the "kids specialist" and evaluated for surgery by the same surgeon who will operate on me because he is the absolute genius when it somes to this kinds stuf here in Perth...One of our other VR.com locals was alsooperated on by this guy and highly recommended him as well...

So I feel confident we will all be well cared for and that all the future measurements we have will be as accurate as possible and not just a hit and miss affair .

here's a lil preview of our 3 sons

 

[PJmomrunner]

Dam*! Dam*! Dam*! This is just not fair. It's good that you know these things, they can get the best of care throughout their lives, and everyone's going to be okay.

 

[Mb]

Wow! You must be nervous.....I certainly would be. It is certainly a good thing that you've become knowledgeable, and had the boys tested. You've quite the journey ahead of you. You will be in our prayers.

Marybeth

 

[Karen]

Oh, my!!! ALL three sons?! 'Glad that you know the need to monitor them, however. Things will only be better because of the knowledge you have now.

Good luck to ALL of you!

Karen

 

[Debster]

They are cuter than cute!! Will keep you all in our prayers....Debbie

 

[Emma]

Sorry you didnt get better news with them all today! I know what its like to have a child with a CHD, as Chloe had a complex one and has a replacement mitral valve but to have 3! I feel for you, really I do.

I have a friend who has a husband and 3 children all with cardiomyopathy and her 4th son also has a heart defect but a different one. She's lovely and if you'd like to speak with her I know she'd be only too happy! I can put you in touch.

Hope all goes well with the boys and I'm sure they will get excellent treatment!

Love Emma
xxx

 

[BAV Pt's daughter]

Dam*! Dam*! Dam*! This is just not fair. It's good that you know these things, they can get the best of care throughout their lives, and everyone's going to be okay.

I echo these sentiments!!! At least you are being proactive and getting started early for them all!!! Life can be totally unfair sometimes. Hang in there, though, you're doing the best that could possibly be done for them. They're lucky to have a mom like you!!

 

[Maureen]

Aussigal...my own heart ached for you when I read your post. I have only one child and thankfully she is healthy. I can take anything that life throws at me but even the thought of her being sick scares me. Hopefully the fact that they have been diagnosed at this early stage and that they will be monitored as they grow will help them in the future.

You seem to have a very good, positive attitude to your own health issues and that's a wonderful example for your boys. Best wishes to you and your family. I'll leave you with a little Irish blessing!

"Go n'eiridh on bothar leat"...( May the road rise before you ).

 

[Tani]

As the mother of a son (Eric) who just had OHS, I can feel the fear and anguish you must be experiencing. While we know it's old news that "life is not fair", this truly blows the law of averages out of the water. If prayers, good vibes, or just knowing so many care, can help to ease your burden, than you have it. We're here for you.
Tani

 

[BDMc]

Doing the Right Thing

Doing the Right Thing

It is news no one wants to get, but you did the right thing. Now you can deal with the problems. As you implied you are much better off knowing. They are woderful looking, and I suspect have enough spirit to pull through whatever lies ahead. I'm sure it seems like a curse, but at least they have a mother that knows about these conditions, and that is bound to be a blessing! I will keep you all in my thoughts and prayers. Brian

 

[gijanet]

Wow! I hope you play the lottery soon...........

Wow! I hope you play the lottery soon...........

cause the odds of all three sons having defective valves has got to be astronomically small. I am so sorry that you got this news, but I am relieved that they are all identified and being monitored carefully. Your boys, by the way, are so cute, pizza and all. Many hugs. Janet

 

[aussigal]

Thanks heaps for all the warm wishes and kind words of encouragement...

We have quite a journey ahead of us ...
A winning Lottery-ticket sounds like just what we need!

I'd always used to say "I got the jackpot" when we scored 3 boys,

but back then we had no idea just what jackpot we had really won .

Monday 21st of November we all go off to meet Luigi the kids Cardioligist. So thats not too long to wait at all. Thankfully we have a pretty good medical-system here in Aus. although those who rely on the public system are entitled to whinge cos its pretty shocking especially the elderly and disabled they get the short-straw everytime..., we are lucky to be able to afford private health ins. so we dont need to wait .(never ever in my wildest dreams did I ever think we'd need it for this tho.).

I also think our boys are pretty cute but I am biased especially when theyre not tearing each-others heads off in a wrestling manouvre .

That piccy is over 12 months old now and yep~...they do enjoy PIZZA! and for once werent fighting...in order of appearance L to R ...Matt , Ben and Steve.

 

[Curtsmum]

Sorry to hear this, what 3 little cutties you have All you can do now is hope for the best and keep on getting them the best care possible. All the best to you and your family. Paula x

 

[mntbiker]

Dam*! Dam*! Dam*! This is just not fair. It's good that you know these things, they can get the best of care throughout their lives, and everyone's going to be okay.

I third that sentiment! I think a few more Dam*! are needed though.

 

[Natanni]

Wow

Wow

How did I miss this thread?

Your sons are gorgeous! I was so sorry to hear about BAV/MV reports, but it sounds like you are dealing with the siuation head on!

We are in our own stuggles now trying to decide if we should echo our daughter (she has a murmur)....she was pretty upset by her Dad's surgery, but doing much better now!

Good luck on the 21st...We will be thinking of you guys, and waiting your report!

 

[aussigal]

God Bless you Nate and Annie,
go have her echoed so you can all have peace of mind from being in-co-charge with your chosen trusted specialist if need be...

let me say this...what if there is a problem that you can fix or avert a potential catastrophe by a quick painless and interesting( my kids enjoyed theirs, the eldest got bored ) echos? so stop worrying and go check her out and anyway how good is daddy now following his surgery?
You are your own best example of pro-activeness go for it...all the best.


These 3 of mine are being amazingly brave in the face of all this ...Steve 10 is actually dissapointed that he will possibly never require OHS . typical boy he wants the big zipper scar and to be frozen and brought back to life ,,,he thought that was really cool!

If there is one thing I have noticed in my short-time learning about the heart it is that I have yet to read of a truly innocent murmur..an uninvestigated murmur is what I would call them
Matt and Steve both have murmurs that hadnt even been heard before and they are 10 and almost 15

ok...now have a re-read of my sig. line...this seems to be very heritable dont you reckon...well it definately was in my case...we are also going for marfans testing on 25th Nov.and 2 of my specialists have confirmend I have IT , so I dont know if that makes BAV more heritable or not...I just remember reading that BAV chances were 20% for 1st child then if they scored it you had a 50% chance od getting another , and marfans has about a 50/50 chance of heritability either carriers or sufferers...I added up the ods and reckoned I had 2 Bavd sons before we even took the kids for testing and the 3rd one ended up with MVP instead wich is the poor relative of BAV...

look,,,just go do it for everyones good health...i wish you all the luck in the world that she is clear, but on the odd chance she is not,,,watch-out cos I'll be annoying you with positive thoughts...cos its all good for kids nowadays..much love ton