Tuesday, February 28, 2023


 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
Skiing in 2018

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