Tuesday, December 13, 2011

Faith, Hope, Love

Faith makes all things possible,
Hope makes all things work,
Love makes all things beautiful.
May you have all the three for this Christmas
and throughout the New Year.

 I found the first three lines while thinking of/ searching the net for nice and thoughtful greetings for my English holiday cards (most of them are in Polish) and I could not have found a more perfect set of words. I'm not that great with poetry and writing in general, actually I'm surprised I've done so much writing on this blog since it was supposed to be purely factual to keep everyone informed about Jasiu and how he's doing, but it has really transformed to a place that seems almost therapeutic to vent, let out my thoughts, fears etc, all while creating an up to date baby book for Jasiu, not to mention cheaper than therapy (just joking here).

As the Christmas season fast approaches and with it the date for the next heart cath (December 27th) I can't help but to think about the fact that our life will always revolve around HLHS and Jasiu's special heart. I don't think it's a bad thing, but it's just our/my new normal, I try not to dwell on it but I find myself thinking about it all the time, instead of less and less even as he thrives and beats the odds every day. 

So those three words mean so much more to me now...

I have FAITH that God will help us through this and let Jasiu beat this disease ...
I HOPE that we have a long and happy life together ... and
I LOVE every day that we are given together.

May you and your families remember the true spirit of Christmas and enjoy this time with your families and thank God everyday for the miracle of life that he has given us.

*** Update on Jasiu ***

Also, keeping with the original purpose of the blog, I feel obligated to update on Jasiu in each entry.
As of today he is still not over the cold he had since Thanksgiving and that delayed his heart cath. The cold progressed from a terrible cough to a runny snotty nose.  Jasiu is a trooper and is pretty good with allowing us to remove the gunk from his nose with the electronic nasal aspirator. For those who are familiar with it, we actually filled two full vials of snot. Poor baby is so stuffed up yet manages to smile through it all.  Instead of fearing that he will cath a new bug before the next scheduled procedure, now I'm fearing that he still won't be over this one. The veteran heart moms weren't kidding when they said a normal cold that usually lasts 10 days for a regular kid lasts twice as long on these heart warriors. As if they didn't have it bad enough. He's coughing much less so he is also vomiting significantly less, which is good for his nutrition and growth, as everyone knows this kid is not a fan of eating, yet looks pretty chubby so calories are always on my mind as well.

I also think his top two teeth are trying to break through since he's been chewing on everything within reach except for food of course. His appetite for baby food slightly decreased and he has been crying at night for a few nights in a row, some Tylenol does the trick for a few hours. I haven't even though of giving it to him until the third almost sleepless night. (though Jasiu is my second baby, we never went though this since we never knew Emily was teething, they just popped up without any other symptoms).

He is also crawling everywhere now. Totally on the move to the point where we will be bringing down the baby gates. The video just shows him how quickly he can go from laying flat to grabbing whatever is all around him. I have yet to upload the crawling videos.

So we keep praying that he will get over this bug in the next two weeks and does not catch anything new during the Christmas celebrations. I hope that the cath will give us some answers because I can really see him struggle to even catch his breath when he's trying to crawl too quickly or even laugh too much and I hope it's nothing that serious because he has done so wonderfully developmentally.

1 comment:

  1. I hear ya on the colds lasting FOREVER for our special hearts- Aly is on week 2 for the same stinkin cold too. Hope Jasiu feels better soon. :(
    I love the Christmas card- your kids are adorable.