Baby girl, dilated miocardyopathy from Argentina, need help

[Willy]

Here you find Lara's improvements viewtopic.php?f=65&t=11562

READ IT TEN TIMES today

We provided Lara's heart with more energy. What you see now is that here heart is able to change structural damage like the mitral valve deficiency. It is realy busy with reparing things that were wrong.

Excellent!

Now we have to wait and see if here heart is able to repair the non-compaction and get smaller.

That takes 1 - 2 years from now. So........................

Look at your doughter and ENJOY THE RIDE

and put 4 generations of women on your bed and have FUN

[Aleta]

Your know how to make me smile

I'm gonna say this to sebastian who look at Lara breathing and then look at me and ask: how many times she did this today???

I whish you a wonderful year!!!

[Willy]

Happy New 2015 for you all!

[Aleta]

Happy 2015 for yo too! Big hopes for this year

I wish wonderful things happens to you this year, and this ride around the sun be great for all.

[Aleta]

Hi Corrij and Willy!

I hope you have a good year start!

Yesterday was crazy, I don´t know in netherlands, but in argentina in these seasons, people get nuts, nervious, going on vacations, cooking at the same time, etc.

Sooooo.... we where calm about your explaining about Lara's short breathing, but Sebastian and I talked about take Lara to the doctor at the minimal change we see. It´s like a trauma we got after two months of telling doctors how some things we saw on her was weird (dry diapers, no feeding right, grow slower), Lara had a diagnosis almost by accident.

So, before new years eve, in the meantime Sebastian went to grosery store for a few things with Benjamin, I took Lara to the hospital.

They were closed but the ER not, and lucky for us, the doctor on call was one of Lara´s cardiologist, not the main chief, but one that knows Lara well.
She did an EKG, measure BP and oxigen in blood, auscultated her and everything was ok!
She explain me axactly what you did, (not the betha bloker thing) and told me that as she starts to move more and more Lara will have short of breath for sure, because heart is more demanded.

But as she moves a lot since a while ago and this is new on her, want to make an echocardiogram on wednesday just to make sure.

So now I´m more scared. This appointments aagh

I don´t think we can see any improves, because Lara had an echo just -almost- one month ago, but we will see, Lara is amazing and so is the protocol. But what I really wish is that Lara hasen´t get any worse!

What it scares me is if the heart has more demand, can get worse or have a slower healing process? I can´t shake the memorie of the doctor who told us that didn´t knew how Lara will be when she start to walk
And the cardiologist who told us that the first year of life is the harder for the heart. As she is premature we have to count two months more to get the year??? some doctors counts the chronological age, and some the corrected age.

Anyway, she is in a great mood, plays a lot, is really smart and sweet, and we have to prepare a party for her first birthday on Junuary 23 !!!

I hope next week we can also find out something about vitamin D ranges, now that the year has started.


Sorry if I enter the panic mode, I´ll try to put it off

Cheers! (Sebastian says hi from behind).

[Willy]

Oke

Better safe then sorry

[Willy]

So today was the echo, any results already available?

[Aleta]

hi willy!

we have to be in the hospital in two hours, now I´m in panic mode. But Lara is less agitated and don´t stop moving! Eats good, diapers full, everything normal so far... we´ll se what the shortness of breathing is about. The pediatrician agrees with you that can be betha bloker.

Wish us luck!

Thank you for remember!!!!

Ale.

[Aleta]

Hi, we just got out of cardio. Lara is the same since last time (27 days ago) no worse or better. It was a quick echo so we have no report to compare numbers. The doctor said that it will be normal if she get breathshortness because she is gonna move more every time, but she has no sing of cardiac insufficiency. Doc said that we have to be happy that we get through the first year without hospitalizations or a g tube. That the goals are small and not to espect big changes in little time, and in the first two years is when she will improve the most for the big cell production.

I would be happy if Lara has an improve, but I'm very grateful that she is no worse, and shortness of breath is nothing!

Doc said that Lara looks great and we should have a good vacation, and take it easy because Lara is great.

So that's the news.

Hugs

Ale.

[Willy]

Good news

End of panic?

[Aleta]

yes, end of panic!

But back to bitter sweet feeling of "no changes" news. I gues it was little time to see improvment but I can´t help wondering if she didn´t stuck in gettting better. But doctor said that we shouldn´t espect big changes in short time because all we´ll find there is frustration. I wanna see my little girl cure and not live with fear, that is all.

But she is amazing, she is like nothing is going on in her heart. so amazing.

cheers

Ale.

[Willy]

You know the answers on all these questions........

But emotionally you are still trapped in all these bad feelings.

I will make you SMILE again

You can see the shortness of breath now as a POSITIVE SIGN

Lara and Lara's heart wants to go faster because she feels so good but the beta blocker stops that.

So she is at the moment physically not limited but limited by a drug she needs to get cured in the future

[Aleta]

[Aleta]

hi Willy and Corrij!

I hope you´re doing great.

Me, I´ve catch a cold for all changes tempertures, one day (like today) is 35° and the other is 20°, Inside home is fine with the conditioner but you go out on the street and you melt! I hope Lara does not catch it too

I was thinking obout doses/weight of ribosa and magnesium. Magnesium is low, I don´t know if try to raise it up, sometimens she poops 2 tiames a day, some 1, and some 0. yesterday was 4! but doesen´t she need more magnesium?
Abouet ribese I remember the calculations was on 8kg, one month ago she weight 8.300 kg, next friday we have pediatrician and I´ll know the exact weight now.

Lara is sitill doing the short breath thing but less than before yesterday was doing a new one, like she was making an efford, like a little complain. But still, she don´t stop to do was she is doing and she is in a good mood

Have a nice week!

Ale.

[Aleta]

forgot to tell you, we are wainting for a kinesiologist friend, found out something about vitamine D ranges...