Baby girl, dilated miocardyopathy from Argentina, need help

[Aleta]

Hi Willy!

Last week we had a improvised visit to cardiologit, because Lara was breathing with some fatige, and the first thing we think about when she shows some sympthom is the heart. It turned out to be a bronchospasm but we got to see Lara's heart.
Function still the same, %28/%32 SF, but it was just one month after last vesit, so we wait and hope to see more imprevements next time.
BUT......................the ventricule measutes are a little tiny smaller! We don't know if was because Lara was having less water that day than others or if it's really gettin smaller, but doc said that is very possible since Lara's heart has less work fighting againts a bad leaking valve. So, we are happy.

Still sometimes fatige breathing, winter is really cold this year and as usual really wet or with lot of humidity, not helping at all. We have alergy and lungs story in the family, so a lot of preventive treatment for Lara

I hope you're doing great,

Regards

Aleta.

[Willy]

From these mg / kg Lara you can calculate the required dosis

[Aleta]

Hi Willy,

We've done calculations again, and the doses are the same.

Next week we have pediatrician check up, I'll tell you how it goes.

I hope you are doing super great

Big hugs!

Aleta.

[Willy]

Excellent!!

[Willy]

How are things going with "my girls"?

My depression is on its way back

[Aleta]

Hi Willy!

So glad to know that depression is going!!! I was kind of worry...

We are fine, Lara is growing beautiful ad strong, and has a stron character too! I'm thankful for that but sometimes she got me running! Is funny, charming, clims and plays, and draw and doing so good

So, I have no excuse to be crying in the corners, and my concerns about Lara right now, are about her future. And then yes, I cry in the corners.

Next year she will be at kindergarden and it's scary, but at the same time i'm happy because it's a good thing, a lot of good things that I didn't knew that were going to be, just happens

So, she is great, I'm great sometimes and sometimes not so much, but we are here and that is a bless.

Next cardio appointment is september 26 (too long from last appointment, scary).

And two weeks ago we had ped's appointment and lara is bigger, gained weigh, and doc said that clinically is perfect. Yay!

Also Lara leave diapers, she is a big girl now!

We hope everything keeps good and improving!

Warmest regards

Aleta.

[Willy]

Excellent

Thank you for the update

[Aleta]

Hi Willy!

I hope you are doing ok and great this days!

We had our cardio check up. Lara is a little bit better
Her heart is 2mm smaller and SF is now 29-33%, low normal range. Not very inside normal numbers but close or inside to the low normal, so that is great!!!!

Doc decrease fursemide from 25mg at day to 14mg, and we have check up in two monts (november 22) to see if she is doing so good as now, and try to decreae enalapril too.

Lara has no restrictions at the moment, juts low sodium diet.

Doc give us the certificate to inscrive Lara in kindergarden or initial school (I don't know how you say it there, is school for 3 years old childs), so I've did just a few minutes ago (via internet here), so Lara is going to school in March, is scary but great at the same time!

I was watching the reports and the size that Lara has now, is the same from april 2015, then got a little bigger specially closer to surgery and now is smaller, but I believe the Z Score must be better.

She is growing beautifull, talking a lot, playing all day, not eating so much as I wish but she is handle it to grow (I'm a small lady, so...) I really hope this happy present is the reflection of a happy future too and things keeps improving.

We have so much to thank you!!!

I hope you are enjoying life Willy!!!

Best and warmnest regards,

Aleta.

[Willy]

Hello Aleta that is good news. Almost CURED

Good sign the cardio is reducing the furosemide

I had a blood poissioning, but with antibiotics it is cured again

This week we go to the boat for the last time this year

Thank you for your report with new values

[Aleta]

Hi Willy!

I'm sorry to read you have blood poissoning!!! But very glad you're ok now!!!

Do you really think Lara it's almost cured? I'm happy to read that, but to be cured it doesn't need to be size and function normal? What is cured axactly???
Doc said that she thinks Lara might need carvedilol and enalapril for life... that scares me because gives me the idea that Lara can get worse at anytime

As you see, i'm kind of depressing as usual, not that much as two years ago, but still have my fears

I love to read the CURED word, I hope it gets real soon

And I would love to do a celebration trip sometime soon and meet our friends in Holand

Aleta.

[Willy]

Not curred yet

But the cardio started to reduce meds. They do that very carefully because this never happens with cmp. Patients get worse and need more meds that is common practice

The SF is almost normal, heart size I told you takes at least two years

So.........

Not curred but we go in that direction

[Willy]

When is the next cardio appointment?

Beautifull drawing from Sebastian on his facebook

And good to read that you love him !

[Aleta]

Hi Willy!

Thanks, Sebastian is an ecxelent artist And of course i love him!

Next cardio appointment is november 21, and I'm already starting to worry, last time doc reduced the furosemide to half dose, so I'm worried that might be to much work for her heart. I trust our doctor but even so, I worry. Doc told us that if Lara keeps doing so good, wil decrease enalapril too, is good but very scary!

We have pediatrician november 14, I hope she gained a little weight.

Lara seems great anyway, she is a little girl, no longer a baby!

I hope you are doing better and great, you deserve it!

Hugs,

Aleta.

[Willy]

Cardiologists RARLY DECREASE medicines. Because normally this disease gets progressively worse and requires MORE medicine.

So you can interpret this move as REALY POSITIVE

I am not depressed any more but I have still a long way to go. The end of November I am going to change my medication together with my psych

[Aleta]

I hope the meds changes work for Lara!

And I hope they work for you as well, sometimes the psych method is not working as the begining and you have to change. I happened to me...

If you think we could help you somehow we are here for you!

Aleta.