Bad blogger ... long overdue update

So I have meant to update a while ago, like in October but we have been quite busy. I think I will update in pictures instead of writing a whole bunch.

 In early October Jasiu fully potty trained during the day so we decided that he should be in a big  boy  bed to try to get him to night time potty train, so he can get up and get us when he needs to go.

Step 1 - take down the crib face .

 

 But he kept falling out so...

 

Step 2 - mattress shopping.

 

 

Step 3 - insert said mattress on the floor

 



Step 4 - when he got used to the idea - set up the mattress on a base and we have ourselves a big boy room and a big boy !!!

 



 

So we have December and we are half and half with dry and wet nights, so I call that progress. For 2 years and 8 months, I think we have a pretty easy potty trainer.

 

Than we were in End of October and we went to pumpkin patch and trick or treating at the mall due to rain.

 

 

Then in November we got a much needed hair cut...

 

 

 

Mid November the kids had their first Polish Dancing concert and they decided they want to try violin lessons. So starting next week we will start and see how it goes.

 

 

 Then we had a very nice Thanksgiving (of which I have no pictures on my devices, so we have to ask Ciocia Aga for them) and then we left for our mini Thanksgiving getaway !

 

This sure beats the Black Friday crowds !

 

They also got an extra treat by seeing a Thomas live show  and saw all the Christmas decorations at Grand Geneva !

 

 

 

Emily even got to write a letter to Santa and dropped it off in the mail box

 

 

 

In other news, we have lost the pacifier and it was only about a 2 week process and now Jasiu doesn't even think about it or ask for it.  More progress.

 

Now, in December we will have a busy month as well and right smack in the middle of the month we have a full cardiology appointment. On the schedule we have lab, echo and general visit. Let's pray we get an all clear and we enjoy our Christmas season.   I hope everyone had a very Happy Thanksgiving, this year and every year we have a lot to be thankful for since we are 7 months post Fontan and doing fabulous ! Let's hope the test prove so the same. 

 





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



Cardiology update and additional diagnosis

  

We had our one month cardiology check up last Thursday and all is well. The appointment was our best one yet from Jasiu’s cooperation stand point.  We pull up to the hospital and he didn't cry, we checked in at reception and first thing he did after saying hi was pull out his hand for an arm band (our hospital gives those out at check ups just in case you were to have other tests outside of the Dr. office in the hospital). This was a good start but next, we get in, he runs to the measuring stick on the wall, then hops on the scale, then pulls out his finger for the pulse ox, raises his hand for the temperature reading, I’m thinking awesome ! Next is our dreaded EKG, because the stickers and leads always freaked  Jasiu out and it was hard to get a good reading, but this time, he just stood still we clipped the leads on and bam, test is done, no tears or hysterics. Finally the echo, when we dimmed the light he did cry for a second and said he wants to go home, pointing at the door, but I laid down next to him and from there he was fine, quiet and still for the entire echo. Never has this happened and I hope it’s a trend in the right direction.

Echo time

From a cardiology standpoint, echo looks good, no signs of fluid anywhere and so our diet change is fine and now no more restrictions. In fact  Jasiu has been feasting on French fries and pizza last week. We also cut down on one of the diuretics, Matolizone is now just every other day to see if he can handle it. One other thing I discussed with his new regimen is the constant bruising and head bumping. As you read in my previous post, this seems to be very common for Jasiu to bump and hit his head…. A LOT ! Based on this new information, Dr. H decided that the Coumadin therapy will be on hold for our guy until he gets a little bit more stable on his legs or more careful, whichever comes first.  Then he played catch with Dr. H and the NP. The doctor decided that it’s less risky to take him off of the Coumadin than to risk a brain bleed if he was to hit his head that hard and be on the blood thinner. I joked that the only way  to keep him out of trouble would be to tie him down to the couch, the doctor responded, we didn't save him with the surgeries so that he would sit down on the sidelines and not get to enjoy life to the fullest. So we continue to live life to the fullest and try to control this little ball of energy that we have now.

Not more than 24 hrs after we stop Coumadin, this is what is on Jasiu’s head ! It's hard to tell on this pic, but it's a pretty nice sized bump and scrape, that actually looks worse today than the day he got it because of the scab that formed. 

He likes to wear his souvenirs on his head. This one is from yesterday’s trip to Brookfield Zoo. We were literally a few feet from the exit already getting ice cream for the road home and there he goes tripping and falling hitting the ice cream freezer with his forehead.  Poor kiddo, he is one tough cookie.

In final news, and for purposes of documenting, Jasiu is starting potty training and he is doing very well. He has big boy underwear during the day and we put on big boy pull ups when we venture out However, on Friday he even woke up dry from the night and after nap time. This is a huge step for us and for Jasiu.  We are so proud of him. 

potty time

The Additional Diagnosis... Well turns out that what I thought was normal after multiple heart surgeries is actually a condition called DiastacisRecti - defined as a separation of the rectus abdominis muscle into right and left halves. Normally, the two sides of the muscle are joined at the linea alba at the body midline. It is essentially a cosmetic condition, with no associated morbidity or mortality.

 It is very visible in the picture below. Jasiu has had this since he was born and since we only saw him laying still before his surgery, I always thought it was because his chest was cracked open several times. This is nothing serious, just something that he should grow out of. The NP joked that I can try to make him do several sit ups daily to strengthen his abdominal muscles but she said its not necessary. They were actually amazed that I brought this up and Dr. H has not noticed ever before.  

Jasiu at our quick lake gettaway getting into trouble. - Notice the ridge in the middle of his stomach. 

Enjoying the summer ice cream cones 

Dancing in the Rain



Life isn't about waiting for the rain to pss... It's about learning to dance in the rain

We went on our first family “vacation” (only 4 days 3 nights) post Fontan over the 4^th of July weekend and this was hanging on the bathroom wall. How appropriate for our life and THIS trip.  Instead of holding back and not traveling just yet, we pack up a bag full of meds, cooler full of fat free food and a large first aid kit and take off for a mini vacation (cardiology approved of course) 

My travelers as we head out

During this short stay in Wisconsin Dells, we visited the Urgent Care clinic, Walgreens pharmacy and the local Walmart, can you imagine if we went on a weeklong vacation. After this trip, Jasiu looks like he went to war instead of a vacation, our toddler is on the move all the time and I feel like I need to invest in one of those kid leashes or something and even that wouldn’t be enough to hold him down. He is LIVING his live, with each bump, bruise or cut and we are just learning to go with the punches.

To give you a quick recap of Jasiu’s adventures:  1) as we check in he decides to make a mad dash for the door and trips, Emily decides it’s a good idea to drag him by his foot to us and that creates a pretty nasty rugburn on his back (we didn’t even check into our room yet).  2) as we unpack, Jasiu thinks it’s a good ida to cover his head with his blankie and run around like a madman. Before I got to stop him he bumps his head on the rather tall table with his forehead. Creating a nice bump and a bruise 3) we go miniature golfing at the resort after we unpack and calm down after the bump, Jasiu gets a Hole in One on his first ever try to golf and a few holes down he trips backwards over the curb and hits his head on the only pointy rock in the area. He gets a pretty deep laceration about a half an inch long. After we get the bleeding under control with the help of the resort paramedics we visit the urgent care clinic with the help of our friends leading the way. The clinic doctor advised that this cut does not need stiches (I was sure this would require stiches but apparently it didn’t) A call to the cardiologist and we are advised to “watch for signs of possible concussion” and stop Coumadin and aspirin for 3 days.  Then we continue on with our vacation.

Forehead bruise (3 days later)

See the rug burn and head wound (both 3 days later)

 Next, I realize that one of Jasiu’s meds were not closed properly, totally my fault, and spills all over the medicine bag so we need to transfer our script to the local pharmacy to get our 3 days’ worth of meds.  Finally on one of our sightseeing adventures Jasiu falls asleep with the pacifier in his mouth and as we are walking along a bridge on the river, the paci falls out of his mouth straight into the Wisconsin river. No Nuk pacifiers in Walgreens so we had to head out to Walmart for a new pacifier, we almost had to buy a pink one but I was able to search the racks for a boy color in Jasiu’s desired shape and size. ( he won’t take other pacifiers and is one cranky baby/ car traveler without it).

Despite the above, we had a great time. We learned that both kids can take up to 4 hours in the car traveling before they get bored out of their mind. Jasiu loves jumping into the water and Emily wants to start swim classes. Both kids were so exhausted from the days’ adventures that they fell asleep very quickly in the evening. We also didn’t need to bring the pack and play because Jasiu did very well sleeping on the bed with Emily, although he didn’t like being smothered by Emily, who loves to cuddle and Jasiu is not a big fan of that, he needs his space when he sleeps.

We visited Christmas Mountain Village at the Dells and it was such a relaxing place to stay away from the hustle and bustle of staying on the main strip. It had plenty of things to do for the entire family and a nice porch for mommy to enjoy a frozen margarita on the front porch.  

Finally, we began the transition to regular food for Jasiu and he was quite happy to enjoy an ice cream cone, mac and cheese and ravioli one day at a time. On the day we came back, we treated the kids to some McDonald’s French fries for being good travelers and we actually had to take the fries away from our little guy to make sure he we didn’t go overboard in the first few days of transition.  He LOVED them. I don’t think he knew he missed them so much since we never mentioned them or ate things he could not in front of him, but the pure joy when we mentioned fries and then while eating was priceless. It was almost as great as when he got his sippy cups back.  

So this crazy journey we are on, we learn to dance in the rain and not wait for it to pass because frankly, our rain will never pass.

I hope the rest of the summer is just as memorable as this trip, just less painful for Jasiu.  Maybe on our next trip we will be able to eat out more instead of bringing a fridge full of food because of special diets.

Waiting and waiting for fireworks that never came :(

Upper Dells Boat Tour

Emily enjoying the water play

Mommy in the kiddie pool :)

Jasiu taking a siesta at the water park