Semi Annual Update !

Last week Last month (I started writing and never posted) we had our semiannual cardiology visit with Dr. H.  With great joy, we have nothing new medically to report, which is a great way to start our summer.   Dr. H has a new nurse who is really nice and I'm sure we will grow to like her as much as we did Angie. { Angie - we miss you !!!}   She was able to get me some of John's hospital records so that I can take with us on our trip to Poland just in case.  She seems easy to work with and that makes me feel a lot better.

Heart function is good with the usual mild leaking, nothing major. Weight 42.5lbs height 43 inches (I think). John was a great patient this time as well and had a good time chatting up all the nurses, doctors and techs.  Dennis, our favorite echo tech was telling the new person whom he was training, how far Jasiu has come from his screaming crying sleeping echos and it really made me greatful that we have such great care here at Advocate.

We are all clear to go to Poland this summer cardiac wise, emotionally though I'm pretty nervous. As most readers know, Jasiu has the "best" luck of getting into trouble, so hopefully we have an uneventful trip.  We will be almost 2 hours away from any hospital equipped to handle HLHSers as far as I'm aware.  I did however meet our new neighbors and her sister lives in Poland not to far from where we are visiting and has a 5 year old HLHS'er post Fontan as well. Makes me feel slightly better.

John is also registered for preschool in our district for 5 days a week and I was working on starting a 504 plan for him just in case, and seems to be some hurdles we need to cross, mainly that we have to wait till beginning of school year to get anything started and I would like him to be in the AM class since he tends to tire much quicker. As a result I think the AM class would suit him better and he would have best experience coming fresh from a well rested night instead of tired from morning play, especially since he still likes to take a nap in the afternoon from time to time.   Hopefully everything works out for us when we get the process started.  Emily and Jasiu unfortunately will not be in the same school this year since she is moving to middle school 2nd -5th grade.  Jasiu will be in the school Emily just graduated from !

Finally, I want to thank everyone who joined our Team Jasiu for our annual Walking/Running for Hope on June 7th .  It was a nice start with a very rainy wet ending.  I haven't seen Jasiu's lips so purple from the cold in A LONG time as I did on that day. Despite the cold weather we had a great turn out and everyone had fun (minus the rain part).  We raised a lot of money for the hospital and the Ronald McDonald house which all stays local to help this great hospital.  I also want to thank my good friend from high school Joanna, who helped me design our very first TEAM JASIU t-shirts.  She did an awesome job and the print came out exactly how we planned on the t-shirts.  THANK YOU !

That is all the updates I have for now, let's have a great summer and hopefully uneventful health/cardiac wise.

OUR BRAVE BOY !

BRINGING IN DONATIONS FROM TEAM JASIU SHIRT SALES

Clever as they come

Our big boy had his preschool screening today and boy did we have a good laugh. These are too good to forget so I'm journaling it here.

Jasiu did great ! He was a tad shy at first but overcame that pretty quickly and by the end he was quite sad that he couldn't stay longer and actually attend now and that he had to go home.

They did the physical development first - stand on one foot, then the other, hop , hop on one foot and then the other. When he sat down he announced to the tester and his translator he was really tired and laughed. I could tell he wasn't tired, but he was amused that they believed him. 

He knew all his body parts and all the items in the pictures except for tweezers. Tweezers.... he doesn't ever see me use them and our kids don't have access to them so I'm not surprised he doesn't know.

He knew all his colors and numbers and had trouble with the letters and sounds, which is ok by me, he only attended school since January of this year so he has plenty of time to learn it.

He had no problem tracing and copying different shapes.

When all the academic stuff was out of the way the situational questions came and boy did the testers laugh at this clever little boy of ours....

Example one:    There is a picture of a kitchen and a fork on the floor. 
         Tester:  What is this?
                Jasiu: Fork
         Tester: Where does it belong?
                Jasiu : On the counter or in the sink
         Tester: Why?
                Jasiu: Because this cat that is sitting here can possibly eat it and then he could choke !

I nearly fell of my chair laughing, and believe it or not that is one of the acceptable answers for that scene.

Example two: Tester shows him  picture of an apple
         Tester: What is this and what do you do with it?
                Jasiu : It's an apple, mom cuts it up and we eat it


Example three: 
         Tester: What do you do when you walk into a dark room?
             Jasiu:  Put on our pajamas and go to sleep!

Example four:
         Tester: Shows him a picture of a coat and asks What is this and what do you do with it?
                 Jasiu:  You wash it, fold it in a shelf and then you can put it on.


So all in all the screening went well, I hope he gets in this free preschool program (it is a program based on need to "catch up" in various areas). If he does great, if not Jasiu will attend the park district preschool like his sister and that will be fine too. 

Finally at the end of the testing I revealed to the tester and the translator about HLHS and they didn't believe until Jasiu whipped out his zipper and showed them his "extra belly buttons".  

Take that HLHS !!!

Make-a- Wish Trip

 OUR MAKE -A- WISH TRIP WAS AMAZING !

So it has been over month since we got back and I just got the time to sit down and write about it.(Ok, so I'm siting down a second time to continue writing.) As soon as we came back I had laundry, unpacking, new school for Jasiu and year end close at work (read: long hours at the office + weekends for almost 3 weeks).  I did go through our pictures during the late night hours and compiled our memory photo book, but it took all the energy I had left after that trip.  So let's start at the beginning...

Shortly after his 3rd surgery (April 2012) I applied to Make-a-Wish for Jasiu to see if his wish could be granted.  For those that are not familiar with Make a Wish, "Make-A-Wish^® grants the wish of a child diagnosed with a life-threatening medical condition in the United States and its territories, on average, every 38 minutes. We believe that a wish experience can be a game-changer. This one belief guides us. It inspires us to grant wishes that change the lives of the kids we serve." (from: www.wish.org)

Jasiu's paperwork was sent to his medical team reviewed and he qualified for a wish, it is a common unfortunate misconception that a child has to be dying in order to have a wish granted.  We were overwhelmingly grateful that he got this opportunity and yet it is also a reminder that Jasiu does have a life-threating medical condition despite how well he looks on the outside.

We met with our wish granters last winter and Jasiu decided he wanted to meet Mickey, Daffy, Goofy  and the clubhouse friends. We were granted to go to Disney World in Florida.  We decided he should be just a bit older before we go so that he can enjoy and remember the trip a bit more. A whole year we waited, the kids even forgot about it for a bit and then we surprised this December that we will be off to meet Mickey.

We had a fun start to our trip as the limo guy is the one who woke us up at 5:15am.  We set our alarm clock for 4:00 am so that we could get ready and then slowly wake up the kids and not agitate them too much as it s quite early for our guys, but my husband set his alarm clock for 4 am on next Saturday not Monday. So the limo driver who was sitting on our driveway since 5am called my cell phone at 5:15 !!!! Well that was an abrupt wake up call, we double teamed, Joe got the bags in the limo, (good thing they were all packed the night before) and I got the kids not so subtly woken up, dressed and out the door. When we were driving away from our home it was 5:25 !!! We did it all in 10 minutes and we did not forget anything. AMAZING ! 

In addition to a limo to and from the airport, with Make-a-Wish trip is you get amazing service at the airport, you skip all the lines, go straight to TSA and get a helper to help you with bags and then we were off.   Our flight was not bad, kids were excited and we got a Give Kids the World Greater at the airport. GKTW is an experience in and of itself. It is a village for "wish" kids. You spend the week in your fully eqipped villa, meals, all you can eat pizza and ice cream plus all other meals. There is a heated pool, splash pad, playground, arcade, and much more. Every week the village celebrates Halloween, Christmas, Birthday party for the Mayor, Pirate and Princess night, etc... ohh and the mayor is a 6 foot Rabbit, Mayor Clayton.  The Mayor can come and tuck the kids in one night, that was a blast.  You can spend the whole week on the property and not get bored at all... but that's not the end of it. We got 3 day passes to all 4 Disney parks, 2 day passes to Universal Studios and Islands of Adventure and 1 day pass to Sea World, it's really amazing because it's not just regular passes, they are "Wish" passes which grant you access to all the rides and character greetings without waiting in any of the lines. AMAZING once in a lifetime opportunity. (let me tell you for Anna and Elsa, the line was about 3 hours long, Ariel, 1.5hrs., Merida 2 hrs. Whinnie the pooh 1hr, most rides were 55 min +. You could easily spend one full day just waiting in lines and we didn't - All the staff members recognize the "Wish Geanie" and just help in any accomodating way they can.

So I carefully planned out each day, located the kid rides we were going to experience and shared it with the family, but as plans like to do, they changed... we were exhausted and had to take a day to recuperate and visit urgent care for an unexpected ear infection for Jasiu.  One day and one prescription for antibiotic later and we were back on track. 

The highlight of our trip for Jasiu was meeting his current heroes, the Teenage Mutant Ninja Turtles.  We had to travel to the Nickelodeon Hotel and had a private meeting with all four TMNT.  It was a bit weird that Jasiu was a very shy and not super ecstatic, but he came around and he turned out to have a blast. I think he may have been overwhelmed by the whole thing.  We all had a good time and enjoyed our private meeting with the turtles. Turns out that the ear infection was already brewing in Jasiu because I checked his temperature that evening and it was elevated. I checked in the morning and it was a full blown fever and an ear ache. So instead of Animal Kingdom, we went to urgent care the next day.

Day 1 - Getting to FL an spending time at GKTW at their Halloween Party

Day 2 - Hollywood Studios including many rides, character greets , Holiday Lights Show and Frozen Sing along experience

Day 3 - Magic Kingdom (New Years Eve)  including Fireworks show, Cinderella's Castle light show (2 different ones) Meeting Elsa and Anna and many more characters, rides and great time. Mommy did 32,000 steps that day !. We were so tired we didn't even make the GKTW NYE party.

Day 4 - Sea World and Meeting the TMNT, great fun day but we started noticing Jasiu being more cranky and irritable. Christmas party at the village

Day 5 - AM - Urgent Care, antibiotics.  PM - Downtown Disney Emily had a princess transformation booked and Jasiu spent lots of time in the LEGO store.  Considering the circumstances a decent day plus Mayor Clayton came to tuck the kids into bed. .

Day 6 - Animal Kingdom - Amazing experience and Jasiu was sooo much better, In the evening it was Princess and Pirate party at GKTW

Day 7 - Day to go home we made it to Universal Studios and in the morning before our flight home to see some more of our favorite character.


This trip was such a blessing to us and it helped us celebrate the hardships that Jasiu went through to get to this point. It was a once in a lifetime trip that I hope the kids never forget, even if it is just by looking through the pictures.


Here are a few pictures and a link to the memory book that I created that captures the amazing moments we had.   I will never forget the true happiness on the faces of my kiddos when they experienced it all.

https://www.scribd.com/doc/252067302/Disney-Photo-Book-2

After the week long adventure, we came back tired and sad that we had to leave but so happy that we go to experience Disney World and Florida in such a special way.

First Day of School

A momentous day in the life of our little warrior - He attended his first day of Preschool !

He was excited all morning for this day and even packed his own snack and juice box. He picked his backpack and couldn't be happier.  When we dropped him off, he did well too. He sat down nicely, attempted to write his name, handed the paper in and went to play until the teacher sings the special song... and that's when I had to leave.

There were only tears of joy and from this mama and not Jasiu this time. I still can't believe that this fragile little baby of mine is now a "big boy" going to preschool.  With Polish School, it is only once a week and I kind of hung around the class and school anyways, but this seems much bigger than that, I will be at work when he's in school, so no easy quick access to him like on Saturdays. 

 

 

 

After picking up our official preschooler, I'm happy to report all things went well !!!!

 

Mrs. Gordon reported that Jasiu was well behaved and did very well and did not or cry for his mama. He is truly growing up and thriving. We are so blessed to see this day.

 

Stay tuned for Disney posts soon. 

 

 

 

 

Cardiology Update

Our cardiology appointment went great !  With the holidays, our trip and everything else, I forgot to update. 

Cardiology - Our favorite nurse has graduated to Nurse Practitioner, as a result she has found a new opportunity outside of our current hospital and we miss her dearly.  W got there and all vitals were good, Oxygen sats perfect, even hit 100% for a while but mostly around 97-99% which is awesome. Then she tells us the doctor will be in shortly... I remind her that he will most likely have an ekg and echo... well no orders were written, I say go check again please.  Of course he was supposed to get the echo and ekg so we get those done, but with the lack of a nurse the orders were not processed properly. That's ok though, all was good.

Heart function is excellent and almost improved, vessels are open as they should be and no narrowing is visible. No medicine changes, see you in 6 months. That's it !

Fantastic news for us and for the holidays and our trip. The holidays were great, the house is full of new toys and we celebrated the birth of Jesus joyously.  

Our trip was mostly a success as well. Those days  will get their own posts shortly, once I go through all the pictures.... let's just say there was never a dull moment...

Perfect little patient

6 month update

I scheduled Jasiu's 6 month cardiology follow up for this coming Friday December 19th.  Always about 1-2 weeks prior to an appointment I get a reality check.  Though it is "just" a check up I always walk in half holding my breath until I get confirmation that things are looking ok on the inside. That is also a time I remember to update the blog these days...  Besides the cardiology check up, life has been just normal, and a lot of "normal" kid stuff has happened and some special heart kid stuff has happened too.

Since I didn't update for almost 6 months so here it goes.

Heart Kid stuff - In July Jasiu switched from compounded Enalapril (basically the pharmacy takes the pill, crushes it and dilutes it in sugary syrup so a baby or kid who can not swallow pills, or the pills don't come in small enough doses can take the proper amount). Enalapril in compounded form is more expensive to make at the pharmacy, but if you have no other choice you pay it.  This past July, the company that makes Enalapril (the pill form) has decided to manufacture a liquid form and hence the pharmacy can no longer just make our compound, they have to purchase it from the manufacturer - as in about 10 times more expensive per month!!! So our great cardiology team re-evaluated last scripts and decided that if Jasiu is ready for a pill, we can switch him from the liquid 2x a day at a small dose to 1 daily at a slightly higher dose than he had before - read $3.50 per month and SO much less messy than sugary liquid and syringes.   He just pops his half pill along with the chewable aspirin and daily vitamin and he's done for the day after breakfast.  This made life a lot easier for all of us.


Our last compound bottle and our new pill bottle (should be smaller since there are only 15 small pills inside, seems like a waste of plastic. )

Normal Kid stuff - In September we decided to sign up Jasiu for Polish School, only on Saturdays for a couple of hours so that he would get used to being in the classroom away from mom, dad or grandma and in the care of a total stranger.  I thought I would be taking it much worse than my brave kiddo... boy were we wrong.  Our energetic outgoing warrior screamed bloody murder the first, second, third... you get the picture.  We tried to stay with him the whole time ( I could not leave the room or he would freak out). We thought it was mommy attachment so dad dropped him off, same thing, so daddy spent the day in preschool, still nothing. I was one hair away from signing him out for the year and to try again next fall and about three weeks ago Jasiu decided he liked Polish school and has no issues staying. I drop him off, he plays, does projects and is doing really well.  So I may be just jinxing myself, but we will try regular English preschool twice a week at the park district as of January 6, 2015 and see what happens.  It's only two hours twice a week and should be no big deal, however if we have separation issues... it's normal kid stuff !

Notice the grumpy face of a kid that does not want to go to school.

Heart Kid stuff - we got Jasiu's Make-A-Wish granted!  We will be leaving for Florida after Christmas to celebrate our warrior and all he and this family has been through. We are so excited for this wonderful opportunity.  Instead of dwelling on the sad fact that we actually qualify for MAW we will focus on the positive that we are CELEBRATING  the life that we were given and that it was all worth it.  More to come on that topic after our trip.

Now all we need to do is pray for a great appointment so we can enjoy our trip and the New Years !  I'm sure I will update after our appointment since it will be fresh in my mind.

I'll leave you with some snapshots of what we have been up to the last 6 months or so...

A little boy who is obsessed with TMNT- Leonardo

A little boy who enjoys himself at the theater a bit too much

We celebrated Emily's 6th Birthday !

We attended a few weddings- here in their wedding best

And we took a few Christmas photos

Silly Boy

Our Princess

All that hard work for this one great photo that captures these two perfectly !

Six Month Cadio update & BIG THANK YOU !

"Everything looks excellent." - Dr. H.

It was by far one of our quickest full workup appointments ever. We had vitals (height, weight, blood pressure, pulse ox) EKG and Echo all in about one hour and a half, and completely out in 2. Jasiu was such a brave big boy already. He only minimally cried at the EKG sticker placement and wire clipping but once that was over it was great. Our echo was also a first - first time no tears AND he did not sleep through at least a part of it. He still did not graduate from the "mommy recliner" to the hospital bed for the Echo but that is ok with me, I love the snuggles. We watched a movie on the tablet and minded our own business while our tech was doing the scan. Even Bob, our echo tech, wanted to know what was going on in "Turtle Tale 2".

Doctor H was happy with the echo and said he has no concerns at this time. No medication tweaking and just keep doing what we are doing. Jasiu's activity level is great and he's happy with that. He did laugh at the black and blue and scraped legs that he saw on our active boy but he said it was all normal stuff with asprin.  We have to schedule a yearly blood draw to make sure we establish a base line for the future but that will be in a separate appointment because I did not want Jasiu to correlate the pain of a blood draw with the same appointment with cardiology.

So we begin our summer on a good note.  Next appointment in 6 months.

***

Now... I need to send a BIG THANK YOU TO ALL that supported us on our Annual Running for Hope 5K - All that walked with us and those that supported with your donations.  It means the world to us that we can give back and help such a great organization such as Advocate "Hope" Children's Hospital and the Ronald McDonald House.   We raised $480 - Thank you! We made great timing too - about 1:07 (give or take a few)  We will be looking to increase our team next year.. (hint hint)

Team Jasiu -2014

Kid's Dash - 2014

Our Superman was a bit over taking pictures at this point


THANK YOU FOR ALL YOUR SUPPORT !

Disneyland Fun

At the end of April we took a big step forward with living a "normal" life and took our first family vacation that involved an airplane ride. To a very paranoid heart mama this is a big deal.

Though I was reassured by our medical team that being post Fontan and overall doing very well, Jasiu will do just fine.  But that didn't stop me from worrying that it's possible that my kid, the one who likes to surprise us, would be the one with issues on the plane.  However, Jasiu did great, better than great, he slept half of the plane ride to California there and back.  

The early morning flight worked in our favor on the way there because even if you are forced to wake up at 5am, it makes it bearable that you are going to Disneyland and the kids both agreed and woke up with smiles on their faces that it was finally the day to go.   We stayed half a mile from Disneyland and visited the parks for two days and then ventured down to Legoland in California for a day. The following two days we spent on the beach and sightseeing with family. We had perfect hot weather and went through two containers of sunblock because we went from 40 degrees F to 90-99 degrees F, and our skin didn't see any sun for about 5 months with the brutal Chicago winter barely ending. We were not about to get burned and be miserable for the duration of our trip.  It was just amazing.  The kids had fun, the smiles and amazement outweighed the wining while waiting in lines. This was a slight preview for the kids to the trip we will be taking towards the end of the year when Make -A- Wish grants Jasiu's wish and we go to Disneyworld for the week and make the whole week all about the kids and their love for all things Disney. 

So without making this a wordy post, I will share our photos that capture the moments so well.

Perfect passengers passed out on the plane :)

 

 

 

Next update will most likely be after our June (semiannual) appointment.

Till then have a safe summer everyone.