Heart Picnic ~ 2013



Jasiu was a little shy

 This past weekend was our annual Heart Institute for Children at Advocate picnic and we had a blast. This event is sponsored by Dr. Illbawi, head of the Pediatric Cardiac Program, and Advocate “Hope” Children’s Hospital and it is a blessing to be able to attend it each year.

This year made is extra special since Jasiu was so fresh out of surgery. Only a few short months ago we only got to see them in scrubs and white coats. We truly appreciate the time that Dr. Illbawi along with his entire team of surgeons, cardiologists, nurses and staff (those who aren’t working the shift that day) take time out of their personal lives and come out to see the patients who get to see them in regular clothes and talk about things other than medical issues. Dr. Illbawi himself talks to each individual family, holds the patient child, because outside of the hospital walls, these “patients” are truly just children, trying to be like everyone else, young and old, just trying to survive and live a life that was only possible because of the medical intervention of this team. And we are parents, not “mom” and “dad” as often just labeled at the hospital for ease of the staff, just want to thank them and shake his hand for literally touching and fixing their child’s heart. It truly is a celebration of how far each of our Heart Hero’s has come and the extreme milestones that they have surpassed along with their families. Also it is a celebration of and a way for the families to thank, our wonderful medical staff at our hospital who take care of our kids when we ourselves as parents cannot.

Finally, we get to see our PSHU and Fontan buddies, those who we also just have seen in their hospital beds and their parents tired and restless as they sat by their child’s side. We got to see friends both old and new and Mia, the little girl who had her Fontan a few hours before Jasiu. It was great to see her and hear that she is attending Kindergarten despite of the hard time she had during recovery, it is really inspiring.

All of our kids are so strong beyond our wildest imagination and they have one common denominator, Dr. Illbawi, the calm poised generous man who made it possible to give our children a chance at life.

Emily is a natural farm girl ~ loves animals

LOVED pony rides

"loved pony rides"

"wait I'm not done with you"

lunch time

Quick Cardio Update

Jasiu had a cardiology visit on Friday 9/13 and I forgot to update until now, when our awesome Nurse Practitioner called to follow up and see how John is with his new meds change. Did I forget to say how much I love our cardio team ! They are really wonderful and so nice and caring, I will miss them now that our visits are getting spaced out even more, but this is for the best of course so it will be a good change. This last visit had 6 weeks off and our next appointment is in THREE months.

Onto the update... John is doing excellent with his Fontan. His heart function is good, O2 saturation's are great and his chest x-ray is clear. From his last echo, there was some small concern over the narrowing of his aorta, where it was repaired 2.5 years ago during his Norwood surgery so we had an impromptu echo just to make sure it's not getting worse. Side note: this is not new, we have seen this on echo since the beginning and even went into the cath lab a year and a half ago to make sure it does not need a stint to keep it open and at that time the narrowing was not significant enough to warrant a stint. So it very well may just be that Jasiu's aorta is a bit more narrow and that's just another thing making Jasiu unique. But to be on a safe side, as Dr. H likes to be, we did the echo to check it out. I don't mind at all because it also puts me at ease a bit to know things are looking good in there. And they are so far it is not getting any more narrow than it was. I had a long talk with Dr. H about Jasiu with his various "uniqueness es" and he decided that we will be slowly weaning the diuretics these next two weeks to go down to none and wrote a script for a diuretic, just as needed, if I notice any prolonged puffiness once in a while - Read: more than just the usual morning puffy eyes that usually disappear within the hour. But his diuretic of choice is Matolizone, not Lasix, since we don't want to chance Lasix not working the way it didn't post Fontan. Next he decided that Jasiu will also benefit from going on a small dose of Enalapril, heart medicine, that will help his blood pressure and the pumping of the heart. Many kids with HLHS are on enalapril as a "maintenance" drug to help keep it strong. So after we are done with the diuretics, I still have a new medicine in the fridge until the dose is big enough to allow for pill form instead of compounding into a liquid (which must be refrigerated). So we have been given a 3 month pass and will do a whole work up again, this time we will be on the echo schedule so the appointment should be over quicker, this one lasted 3 hours! (but if you want the best I think a few hour appointment is a small price to pay in the long run).

A more fun thing to look forward to is another picnic with all of our heart warriors and medical staff hosted by our very own Dr. Illbawi. Jasiu has been practicing so that he can say Illbawi when he finally meets him. I'll be sure to post pictures. Thank you for your continued prayers and support.

Just a walk/ jogg pit stop with mommy

3 hour appointments are exhausting - waiting for Dr. H.

keeping entertained

favorite part X-rays - say cheeeeeese

Potty Training

It has been over a month since I posted last, which I keep repeating, no news is good news in our lives.  It means we are all good and enjoying life post Fontan as normally as possible.   I feel obliged to memorialize a big step in Jasiu's life... potty training !

We have started a month or so ago with being very relaxed about it and introduced the potty. We picked one out at the store with Jasiu and started. We didn't stress him for the most part, just asked if he wanted to go constantly and somehow he caught on.  We have not had a #2 accident in a LONG time and we are getting a few days that he will wake up from nap or night time with a dry diaper. Other than the naps and night, he has stayed dry all day for almost a week. He does have some accidents where he's playing so much that he "forgets he needs to go" until the very last minute, which causes his underwear to get a little bit wet, but the rest is peed in the potty or the toilet. We change him and remind him that he needs to go in the potty and that's it. He is also able to hold it much more now, as in the store or car, more often than not he waits until we get to the bathroom instead of wetting his pull up.  This is a pretty big step in most kids lives but I'm especially proud of this kiddo because he is still on diuretics, which make him pee much more than normal kiddos. We are weaning those diuretics very slowly, so maybe in the next two months he will be completely off and then nighttime will be easier on Jasiu since meds won't be pushing his natural cycle more intensly.

Other than that, we are out and about trying to soak in the last of summer. Emily started school before Labor day and Jasiu is getting used to being home alone with grandma.  Every day he walks his sister with grandma to the bus stop on the corner wearing his little backpack and he loves it. I think he will want to go by the time he's ready since he will be so used to the idea with Emily preceding him.

Our next cardiology visit is in a week so I ask for a prayer that all goes well and we only get good news. You never know with these kiddos because they may look great on the outside but the inside is a whole other story. As always praying for a clean report.  Thank you all

 Here are a few pics of what we have been up to. - This is Jasiu and Emily being silly at the splash pad. The energy in him is unbelievable for a kid with "half a heart".



Newest musical instrument - the accordeon - he LOVES it






Emily's first day of Kindergarten




First day - we have since then bought a "cars" backpack for Jasiu




Celebrating Emily's 5th birthday and Jasiu's 2.5 birthday




Zoo day with grandparents




If you follow the path, you will spot Joe helping Jasiu pee in the woods - he just had to go




Fishing