Wednesday, December 26, 2012

Merry Christmas

Praying at the Manger - (I would like to think they are praying for good health)

We had a wonderful Christmas shared with our closest families that spanned over about three days.  We start out on Christmas Eve with a traditional "Wigilia", open presents, go to midnight mass  OK, now with kids it's 8pm mass. Christmas Day we go to mass once more and we usually dress up in our traditional outfits and celebrate with a big dinner once again. December 26th, though most have to go to work, I took vacation and celebrated the birth of Jesus once more in church for a mass with just my kids since dad had to work, the remaining of the day we spent putting all toys together and playing with ALL the stuff the kids got for Christmas.

It was ALL great!

So far the best present was that the kids is our health.  So far we are all healthy and not any visible signs of colds just yet.. shhhh and knock on wood.

I hope you all had just as much fun as we did and that you got to spend your holidays with the ones that mean the most to you and really experience the real meaning of Christmas, the birth of our Savior Jesus Christ.

My angels before Wigilia

Can you tell she is excited

Concentrating to pry it out of the box

Smile, smile, smile

Ughh.. they are over it !!! haha

Friday, December 7, 2012

Always Something...

Wouldn't it be nice to have a day off where I can just spend the day with the kids, do the usual errands, etc... nope, not around here. John likes to keep us on our toes and this time came down with pink eye, yep, pink eye.

Gross, pussy, pink and swollen eyes. Our kid just needs a break. I know in the grand scheme of things this is nothing, but it's always something.  So off to the pediatrician we went today because if it got worse over the weekend there would be no one to see him on Saturday or Sunday besides the ER, and boy do we NOT want to go there!  So a quick call to the ped at 9:30 and we are in at 12 pm right after Emily's preschool.  I also asked to do a full check because of the swollen eyes made me think if he wasn't gathering fluid so she felt the liver and funny how she just knew what I was afraid of (every heart parent knows my biggest fear) She said that it's not the same type of swelling if he was to retain fluid and be in heart failure, but better to be safe than sorry and I'm glad our pediatrician is on board. While we were at it, we checked the ears and it turns out that last month's ear infection wasn't quite completely gone and there is some fluid still in the right ear so we were given a different antibiotic instead of just drops for the eyes.  Hopefully this medicine tastes good just like his Enalapril.

Also, we scheduled the next heart catheterizing for January 11, 2013, because what a way to start the New Year than with a hospital visit... that's just how we roll. I already spoke to the nurses who scheduled it and said that it most likely will be OK to give him a dose of Versed before they start doing ANYTHING to him to make him a little loopy and hopefully a lot more calm and relaxed... than the nurse asked me if I will need some as well... HA!  I wish !

Till next time..

Monday, December 3, 2012

Cardiology Update

This past Friday we had a cardiology check up and it was not as bad as it was last time but I think we are still about 2 years away from cooperative Jasiu at cardiology. So until then, daddy is coming along for the ride.  So again Jasiu was not a fan of even the receptionist as we walked in, but we distracted him with some toys and books in the waiting room (this bought us 10 minutes), however since we had an appointment first thing in the morning, as nurses were walking in andsmiled at him saying to each other "ohh look how cute he is" he lost it again. Then when the door opened again for our nurse to take us back and Jasiu lost his marbles... again...

Weight - a whopping 27 pounds
Height - ??? I didn't even get to write it down
Blood pressure - decent
Heart rate - 150 (not his normal but he was screaming for a good 20 min by this point)
Pulse Ox - 79-82%, but again he was screaming so that's not necessarily right.

Echo time was awful tolerable. The poor kiddo cried and cried and we tried everything imaginable - bubbles, lolly pops, cell phone, tablet, books, peek-a-boo, TV, no TV, in my arms and on the exam table, etc. I felt so bad for him, the look I was getting seemed as if he though we were betraying him by holding him down hostage while the tech was doing he scan. Well.. we got a few periods of decent calmness and the tech was VERY patient and was able to get what he needed for the doctor. By the end of the echo Jasiu was so tired that he was almost falling asleep (what we were praying for this whole time) and as he was dozing off, he could see the tech from the corner of his eye and began sobbing uncontrollably... again.  My poor baby was so scared and there was nothing we could do.

After the echo was read, Dr. H came in to do his exam and discus the next steps. -

The echo looked "good", doctor's words. Although the heart muscle is still a little bit thickened, the doctor said that the function is great and is pumping really well. He said the Enalapril is doing what it should be and we are staying on the 1ml twice a day as we have for the past year. He ordered us to have a heart catheterizing done in the next few months and we asked if it's fine if we have it done after the holidays and he said it was fine, so we are waiting for a call to schedule it and I plan on doing it in the first few weeks of January, depending on availability.  This puts us a little at ease because we can enjoy Christmas and New Year celebrations with family but at the same time we will have to be on higher alert so that we try to prevent him getting sick before that cath. Even a cough, runny nose or anything along those lines, as little as it may seem will defer the cath because a lot is at stake with anaesthesia and the evasiveness of procedure so this is a big deal. The results will tell us if we are a good candidate for the Fontan (which right now it seems as it is but we need this diagnostic test to tell us). Once this is complete, Jasiu's case will be brought before the surgical and cardiology team to discuss and tell us to schedule the Fontan.

So this is where we are.  We are in a good shape and trying to enjoy the season with our family and making memories and spending good quality time together as much as we can.  The first fun thing we did this December was to see Santa... well it was fun for everyone but Jasiu- he was not a fan of Santa :( but we had fun, nonetheless.

Waiting for Santa

Jasiu not so happy to come near the Big Man

Out of sight out of mind...

Emily not shy at all :)

Playing with cousins

Silly Boy