Update on Ania

[Zofia]

Ania is doing quite well. We try to make the breaks between FFP longer. She used to get plasma every Monday, and now She gets it every eighth day since April. Next week we will start getting FFP every ninth day. We make this change very slowly and carefully, making some urine tests in home, and extra testing in our hospital. We had tray to do same thing two years ago but than it finished with the relapse. She is bigger and stronger now, so we are trying again. Her test results are surprisingly good.
Creatinine 0,7
BUN 23
Other results normal for her age.
The only problem is albuminuria. And high blood pressure, but it is well controlled by medicines.
But any way I'm scared.

[Svetlana Finley]

That is awesome!!! I hope everything will work out, Anna is not getting anymore plasma for last 3 month ;-) Our Dr. and I hoping that she won't need one for long time.

[Amy Swarbrick]

Brody hasn't had any ffp since last August and is now only doing labs every 2 months. Does this make the fear any less....no. I think as moms we will always be fearful of this horrible disease. On the other hand we have to live our lives and enjoy everyday we have with our beautiful children. We'll be thinking of Ania and we hope she will stay healthy!!

[Cheryl Biermann]

I know what you mean, before Nathan lost his kidneys I used to think, yeah, now that we're doing well, we're getting ready to mess everything up again! But as you can see, some kids really can stretch it all out for several months-little Chloe is a good example of that. So, we will be praying that Ania is one of the lucky ones. I love the new pictures, thanks for sharing them.

[Linda Burke]

Hi Zofia,
Ania is so cute in her pictures - we'll keep our fingers crossed that she will tolerate the extended times between getting FFP! Glad to hear that her test results are good, and wishing you many long and happy months of summer fun with continuned good labs.

[lisa ann peterson]

hang in there.. its very scary at times but we have very tough kiddos..