Teenager ~13 !

 ***13***

Turns out I missed a big birthday post back in February . 

 We have a teenager !

As sweet as that sounds, the attitude is starting to come out in this one also, but nothing compared to his 15 year old sister :-D  

John has had a busy winter skiing, his favorite sport. We made it out to Wisconsin 3 or 4 times this winter before his birthday to go out skiing .  Nothing can stop this kid . 

He is sweet, caring, a good friend, creative and adventurous! Loves skiing, fishing, trying out golf. Turns out he's not a fan of school anymore, what 13 year old is, and is rethinking his previous aspirations to be a architect or engineer due to the amount of schooling. We are hoping he comes around. This kid is very creative so we hope he does something with that. For now, he's trying to enjoy life while mom has to remind him to keep up the grades and take his meds. 

The only video I got of John trying out his jumps on the ski's. 

*** 2023 Recap ***

*** 2023 Recap *** (started in January posted end of April)

We had a very busy 2023 with John !
long story short... all is great

April 2023 was Jasiu's 10 year anniversary of his Fontan surgery - last of three.  Making it to this milestone means that he is now in a new cohort of patients post Fontan.  Our wonderful team here at Advocate prescribed a series of testing to establish a baseline. 

6/1/2023 - we had our annual check up with Dr. VanBergen to discuss the summer to come and reasons for all the testing and to get John comfortable with all that is to come as well.  As usual, John did not disappoint and had a ton of questions and they were all answered, those that know John, know he can talk and talk and talk, and the Dr. took all of his questions seriously and answered thoroughly. 

6/16/2023 - Bone Scan - this one was relatively easy. Funny thing is it's done at a Advocate Center for Breast Care and Joe had to take him that day.. so waiting room was a bit awkward. However, the test was quick, John did great. 

7/13/2023 - MRI Heart/Lung - John did great. Best part, he got to watch a movie during it. The IV was a bother to him, but he took it like a champ. 

7/21/2023 - Heart cath - This one was harder, but they were in and out in 45 minutes. We were going to go to a breakfast outside of the hospital while they do this, since we were first case we didn't grab anything to eat plus John couldn't eat so we fasted with him.  Good thing we opted to go to hospital cafeteria, we barely started breakfast and they paged us to come back.  Getting out of anesthesia was hard for John, he felt he couldn't breath, they had to mildly sedate him for a bit longer until he calmed down. Then the dreaded 6 hour laying flat time. We watched movies, played monopoly, played video games, etc.  By evening we were home and John had a great evening with his cousin watching more movies since his activity was to be limited.  The reason for such a quick Cath---  all looked great and no intervention necessary !  All great news. 

8/4/2023 - Stress Test  - this one was tricky, but John again was a star. At first it was difficult. It's difficult for an adult, let alone a kid. Once he calmed down, he was able to focus and did awesome. He had some freak out moments where he thought he would suffocate (since they close your nose and you have to breath only through the tube). I don't know. I felt bad, I never had a stress test, so it was difficult to see him go through something I had no experience with.  However, the tech was also very understanding, took his time to explain, give him time to recuperate, and start again.  Turns our his stamina is actually pretty good. 

10/30/2023 - MRI Liver/Abdomen - this one was an extra add on. The center we go to got a new machine for this test and it had to be done separate from the first MRI. This gave us more insight on the status of his liver. The liver takes the hardest beating if you don't have perfect circulation, like the one with the Fontan that John has. This one was even faster than the first MRI, John didn't get to finish his movie ...  He  did great, we went for a nice big lunch and celebrated the end of testing. 

11/16/2023 - Final appointment with Dr. VanBergen + Standard EKG and Echo. We discussed the whole summer. John asked all his questions. Some were silly, some insightful. Again, it is difficult to hear questions knowing that he now understands consequences, is taking responsibility for himself and knows that he has some limitations.  The hardest part for him was hearing that someday he may or may not need a transplant. Nothing indicates as such at this time, nothing, but being full disclosure, the doctor did mention it in passing, and John did have questions on that.  It is very very difficult to hear his concerns, concerns that a 12 year old should not have.  It's also difficult as the parent, because all that he is going through & feeling, we just don't know.  We talk and listen, but I can't say I know how it feels and that is not fun/

I will forever remember that it took us over 45 minutes to get him to calm down for echos as a baby, to the point that my arm would be numb from not moving it, for fear of him waking up and not getting a good echo.  Now its so easy !

So there is the recap of the 2023. In between there we had family in from Poland and didn't really have time for a family summer vacation other than quick weekend getaways whenever we could.  We will make up for it with a 5 week trip to Poland in summer of 2024! 

12

 So we have a 12 year old ! 

Jasiu turned 12 this past weekend doing something he absolutely loves Skiing! He said it was the best birthday yet !   (for us they are all THE BEST)

We have not had an update on here in a long time... I mean I have a draft of 8! and 10! and have not had time to finish them. So a lot has happened since 2018 , our last post,  but nothing heart related other than our routine yearly appointments.  We truly have been so lucky to be able to visit the Advocate ONLY once a year for a quick check up.  In the past 5 years Jasiu has grown up so much and yet as most 12 year olds we still have to remind him to take his meds almost daily and as much as I want him to take responsibility a little part of us wants to be able to take care of him for ever.  He is still on only Lisinopril, aspirin and a multivitamin, a regimen he is so used to he can get them ready in his sleep for the week. 

This year marks a very large milestone in April, it will be 10 years since his Fontan, his third open heart surgery.  We can't believe it ~  10 years~

At our heart center, this also means it's time to do a bit more than just an annual check up, the doctors told us this last year and we had almost a year to prepare and yet it still makes us so nervous, us as parents and Jasiu  the most.  For anyone who knows this kid, his mouth never shuts up, he can talk your ear off and has so many ideas and questions and when it came to this upcoming summer, it is no different.   He still tends to forget it's coming up, but when he does, he has questions that are so hard to answer.   We will handle each one as they come and try to make him most comfortable and not scared as possible. 

Our cardio appointment is early June, then they will know more and schedule an MRI, Heart Cath (possibly inpatient if any intervention needs to be done) and I think some other testing.  All will be determined at the June appointment. The carido team said we are in good shape and its not urgent to do all this in the summer so that he doesn't miss school and has the summer to recuperate from the invasive Cath and just emotional roller-coaster. 

Until then, we pack up our ski gear for the season and start planning our warm weather Spring Brake vacation to take our minds off of what is coming up.  I hope to be able to update more as we go through the next few months. 

Our last weekend trip Skiing

In 2021 we visited Pikes Peak in Colorado and John had the best O2 sats of all 5 of us, here he is at 11K feet elevation. 

In 2021 it was the last Team Jasiu 5K (virtual)

In 2020 We got ourselves a dog (John was 9)

In 2019 we also visited Give Kids The World to visit Jasiu's Star from Make-A-Wish

In 2019 our Team Jasiu raised a lot of donations for RMH, they gave us a sign on the route

Skiing in 2018

2018 Summer Update

Cardio appointment -

First things first - John had a great annual cardiology appointment. It was quick. Echo, EKG were all good and unchanged, which is great.  We did not have to have labs or EKG because last year's were great and now Dr. H. wants to do them every other year. I prepared Jasiu for a blood draw and of course promised a Target run after the appointment and there was no labs !!! "But we still get to go to Target Right?!?" inquired John. (this one is easily bribable) Quick and done and to Target we went and I could enjoy the summer with a little bit of ease, as usual.

 

 

 

 

Our Summer -

School was out and the kids couldn't be happier.

Our summer seemed short as always, but there was no shortage of fun.  This year we put up a nice pool for the kids. It was a temporary type of pool, but with a pump and a ladder to get into, so it was much better than the blow up pools they had in the past few years.  John really loves the water, he would go in even on the coldest of summer nights and swim, jump and splash all day long.  The kids enjoyed it so much we are thinking of putting in a large heated pool next year, but that is TBD... for now.

We start off the summer as usual with the Running for Hope 5K ! We had a great turn out and I loved seeing our friends and family support our great hospital that has and is continuing to support and help us on every step of this journey.  We love Team Jasiu ! Thank you for being with us !

We went camping, to Indiana lake house and our big trip was to Tennessee.  I was wondering how John would do with the higher altitude and he did just fine. His endurance was great and was as active as ever.



John also got brand new glasses this summer. I have noticed John was sitting closer to the TV on the floor instead of the couch and we decided to bring him along for an eye doctor visit that we go with Emily  every year (who has been wearing glasses since Kindergarten).  Guess what ? John is now a proud owner and has been inducted into the Glasses wearing club.  Let me tell you, it's not easy to transition to glasses, we lose them about 100 times a day... but he's getting used to it.

This summer was also our very fist ER visit ! It was actually nothing heart related, rather boy related, fast and pretty clumsy boy related.  John split his ear open on our stairs when he was running around and there was blood everywhere...  Turns out that they don't like to do stiches on the ear if they aren't absolutely necessary because the soft tissue would be more deformed from the stiches so they decided to glue it. It was determined that he did not need a CT or head scan since the bruise was not super large and he did not lose consciousness. We stopped our aspirin for a few days while the ear healed. He was up and running the next day ... Boys will be boys.  It wasn't fun and I as always thought of all the bad things that could have happened but all is good.  I'm actually surprised it took us 7 years for this type of injury. 

Let me tell you this looked MUCH WORSE than it appears on a picture !

Just chillaxing in the ER...


 2nd Grade  -

Now that summer is over we are off to 2nd Grade !!!  This mama can't believe it that we have a 2nd grader - a Middle Schooler - in our district. This is the first time the John and Emily are in the same school, though only for one year. Emily started 5th grade and is super excited for her last year in middle school  before she is off to Jr. High.   We wish every one a safe Back to School.

2017/2018 School Year Recap

The 2017/2018 school year is coming to a close and we have put 1st grade in the books.

Another milestone crossed - off to middle school he goes !

 

In our school district pre-K, K and 1st grade is  a separate school from the 2-5th graders, which means Jasiu is now in the same school as Emily for one year while she goes through 5th and then moves on to Jr. High, which is in another school. This means that next school year both kids will be in the SAME school. This is huge for this mama.

 

First grade went great for John, we now know he is excelling in math and it comes quite easily for him, even his timed addition and subtraction facts (with some extra practice at home) has been awesome. He has not struggled with the clock, fractions or anything particularly, though he could benefit from slowing down and organizing his work a bit more. His penmanship could use some work, but we are all working on that.... aren't we.  Reading and writing are his weaker areas and he does not enjoy reading as much as his sister. As creative as he is, he does not want to put pencil to paper to write and express his creativity in writing. Bummer.  However, this too we will work on over the summer.  He does extremely well on his standardized tests and for a kid who was on bypass three times as a baby, that is awesome. Sometimes mama has to remind herself to be patient as we do homework .... (let's just leave it at that... teaching is not my calling... )  Favorite subject, John will say is gym followed by recess and math is a close third.  John enjoyed his classmates and generally likes/ tolerates school. 

 

This winter we went skiing a few times and this year Jasiu really liked it, didn't seem to be too tired and went on the bigger bunny hill instead of the nearly flat one. He said he is ready for the large lift but I am not ready for him to go on that yet, maybe next winter. Emily went on the large hill green trail this year for the first time and she is 9.  Here is our little skier.

 

 

 

The last post said we are looking forward to LEGOLAND in October 2017... well it took us until March 2018 to finally plan it and go, so we took a week off of school and went to Florida early this spring. We took our homework with us and enjoyed some sunny FL, while Chicago had temps in the 30's.  Jasiu was in LEGO heaven. He loved every aspect of it, he loved the room, the LEGO play area, the cafeteria, theme park and the LEGO figures walking around (though we didn't see as many as we thought we would). After LEGOLAND we went to Treasure Island FL to the beach for some relaxation after LEGO mayhem.  It was a great vacation for all of us.  Next stop Gatlinburg, TN in July, stay tuned.

 

 

 

 

Next week we have our annual cardiology appointment. I will post a quick update as soon as I have time.

 

At home and school John has been feeling great cardio wise. He is stronger than ever,  now that the weather has gotten really nice, the kids have been on their bicycles and I have been running behind them with Dominik, now 2, in the jogging stroller. I'm proud to say John can  bike ride 3 miles  with no problem, except for the large hill on our way home, but even I can't bike ride that hill all the way up.  We did the 3miles at least 4 times in two weeks. Emily can almost get all the way up that hill by the way.  Speaking of bike riding, this spring is the year that John finally learned to ride 2 wheels. Since dad was suffering from a knee problem, mom taught John how to ride the big two wheel bicycle. It only took him about 3 days to get the full swing of things. Now this summer mama can get in shape while running after the older two on their bikes.   We have also been really impressed with John's upper body strength. apparently he has been practicing monkey bars at school and showed me how he can do them every time we go to the park. I  am attaching a video to this post for all of the readers to see. This too is  proud mama moment.

 

 Well, we bid 1st grade farewell and off on summer vacation we go.

 



Cardio Update 2017

Cardio visit this year was June 30th and this mama is a month behind on the update. 

We are happy to report that our appointment went smoothly. We started out with labs this time, which never happened but this also means that we had the blood drawn first.  We (Jasiu) was  quite a bit concerned and did not like it at all, however it allowed us to get lab results right after our appointment.  Well getting blood drawn is never fun  but Jasiu did awesome for a 6 year old. He shed a few tears, but cheered up as soon as we left the lab.  He had fun telling everyone he is going to LEGOLAND soon (October hopefully) but to him it can't come soon enough.  After a quick blood draw and a lollypop, we were off to echo lab.

There we briefly saw our Fontan buddy Eli, but because of patient privacy, etc, we could not talk only in the waiting room but then we were whisked away and didn't get to talk much.  Eli is doing awesome as well.

We had our height and weight measured weight 23.2kg which is 51.04 pounds   and 113 cm / 44.4 inches tall ( Still not tall enough for the pool waterslide :(  ) Oxygen saturation was great near 100% and EKG was good too.   Echo was wonderful, we had our old buddy do our echo, he has worked with us since Jasiu was a baby, he remembers the struggles and lengths we went through to get a good echo, and this time as usual, Jasiu laid down, turned on his tv show and only complained once because he was uncomfortable, usually when they look though the jugular angle, from top of neck down at the heart, requires an arched back and head tilted back (kind of like looking at the TV upside down.)

Once our echo was done and Dr. H. read it, he came in to see us.  When Jasiu saw him, he gave him the biggest bearhug I have seen him give someone who he barely sees anymore.  It literally brought tears to my eyes.  We talked about endurance, school and next steps, and we were explained that right now we are "cruising".  I was told we don't see much of any issues until teen years, which of course we hope to never see, but for now to keep doing what we are doing and enjoy life.  We will do just that.  We sported a holter monitor for 24 hours (Friday all day and through Saturday, until we got to Michigan for the 4th of July weekend).  Jasiu, though he DID NOT LIKE having it on, did not complain and went on his merry way.  Results came in just last week, all normal.

I did explain to Dr. H. that we had a slight mix-up in medicine late May, where Jasiu was getting 3x the Enalapril dose he was prescribed for 5 days... This mix-up was caused because I did not pack the 7 day medicine dispenser and Joe thought he was supposed to get full tablet of  Enalapril and aspirin. When this happened we noticed a huge increase in Jasiu's night time cough. Well turns out that he outgrew that dose anyways so it wasn't that  bad for him as we thought.   I'm not sure if related, but we were switched to Lipril.  So far so good with the new med, and no cutting required.   It has a longer half in the body so stays effective longer.

After our appointment we went as usual to Target, to reward Jasiu for all of his cooperation, of course Pokémon was the reward, because God only knows we don't need any more Lego's.

We had a great 4th of July weekend in Michigan, berry picking, beaching, shopping and eating and finally blueberry picking and finished off the holiday at a great BBQ  .

We are off to enjoy what is the rest of our summer vacation and off to 1st grade we are.

Here is a few pics from May (Dominik's first birthday session). All the kids are growing up so quickly.

Goodbye Kindergarten

So this just happened (2 weeks ago)!!!

Just like that this boy is out of Kindergarten. He graduated wI think so much excitement to go to 1st grade that it melted our hearts. 

His class had a graduation ceremony where all the kids walked the stage and sang songs for the parents. It is so joyous to know that we crossed another milestone in his life with no major interventions or setbacks.  We all went to see him graduate and even Grandma and my sister attended.  Jasiu was so proud and happy and so are we. 

We have truly been blessed because we are so fully aware of the alternative. 

We have a jam packed summer with outings here and there to go out and enjoy summer vacation. Jasiu is excited to swim hike and do so many things and we pray gets to do it all.  We have summer passes to the local pool, dad is with the kids all day and mom is working summer hours so this should call for a nice summer. 

Junemployment 30th is our annual appointment so wish us luck.

A new Outlook...

As I was posting the most recent birthday post, I realized for the last three years I only had 15 posts and in the first three years I had 135 posts.

 As always I have said that no news is good news in the heartland. Much of the first thee year's updates were our day to day lives in order to document our journey -  the good, the bad and the ugly.

The original purpose of this blog was to keep family and friends updated on how Jasiu was doing so that friends and family, whomever was interested, would get up to date information.  As we have progressed in our journey and our life became  more and more "normal" I have failed to update because we were living our lives. At the same time, I began to have more and more time to devote to helping newly diagnosed families and show them hope and the joys that this journey can bring.  As I was talking with some of the families I was paired up with, I often pointed them to this blog to give them a glimpse of our day to day lives were in the beginning  because that was their #1 worry and they read all about our hospital stay experience and how we dealt with all of this.  I now realized how scary that must be to read, even though our journey has been relatively "easy".  I know, I did the same when we were diagnosed.

One day at a wedding we attended, I met a woman who came up to me and said these exact words "You don't know me, but I know you very well". This may sound strange at first, but turns out that she heard from a friend of a friend of a friend who had a "child with a heart problem"  and I'm not exactly sure if she googled our blog, or someone pointed her to it, but she found my blog. Turns out she had a little girl born with a large VSD and was for lack of a better phrase, heartbroken. Her daughter's heart  had to be operated on shortly after birth. She said that during her daughter's hospital stay she read our entire blog and got courage that if we can get through HLHS, they can get through their journey too.  She was the nicest lady and we connected right a way. The heartland does that to people, it's the club you hate to be a part of but you are thankful when you find others like you that you can support each other. This scenario is fine if you are thrown into the heartland unknowingly, after birth of the baby. However being prenatally diagnosed, reading the first two years of our journey can be scary. And it's not an easy path to choose, but it can be as good as you can make it.  Where there is a will there is a way.

So in the spirit of trying to provide more hope, my goal will be to post more often our everyday accomplishments hopes and dreams. Hopefully seeing all the positives of this journey will give strength and courage to as many families  affected by congenital heart defects to choose to walk this path that they were given bravely and with hope to live each day to the fullest.  

Not all days will be great, but all days you live to see another day are worth living.  No one knows what tomorrow will hold, and we don't know that our or Jasiu's future is certain, but we choose to live and do everything to strive to be better than yesterday and that should suffice.

So anyone starting to read our story starting just now, read all the current good stuff happening now and then the hospital days, because those hospital days will pass with God's grace you will survive it and be thankful each day forward, as we are.  

Here we are living our life with HLHS in the last 6 months  :)

Last weekend getaway trip to Wis Dells

Being the best big brother

Being the goofy brother

Loving some monster trucks

Loosing your first tooth

Skiing and not giving up

just plain silly

best presents under the tree

more silliness

Being the cutest ring bearer

exploring a firetruck engine

and some good pontoon rides