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.

One Year Ago Today....

... We handed our boy over for his THIRD open heart surgery, the Fontan.  I am ashamed to say that  that I forgot about the significance of this anniversary until a dear friend of mine, in the midst of her own personal loss, posted on my FB page "Happy Fontaniversary".  In my defense, we are super busy right now, I'm changing jobs so I'm transitioning at work, and worrying about starting my new one. I'm getting ready for a conference I'm going to this week NPC- QIC, National Pediatric Cardiology Quality Improvement Collaborative. https://jcchdqi.org/ . Vacation planning (since we need to take a vacation in between my jobs because it's hard to take a vacation as a new hire and Easter was just last week, etc.  Basically, life is hectic - a good hectic where we can worry about normal things and not looming surgeries or cardiology visits.  But I don't know how it slipped my mind.

Last year we felt like we were starting all over, though we knew that this day was supposed to be the beginning of a "new beginning" for Jasiu and our family, that a Fontan is the last planned surgery, it was still hard to go through it. As any parent we were scared for our boy and for our family and all the what if's were just hunting our dreams every night. We didn't know what the recovery was going to be like this time around, what effects it would have on Jasiu physically and mentally, how he would react to his new circulation and to the trauma that he went through. It didn't help that we had a rough recovery and it seemed like months... well with the liquid restrictions and slow medicine weaning and diet changes... it was a good 6 months before we were back to "normal" but the time in retrospect seems like it was so long ago because we were blessed with the next 6 months of an even better version of Jasiu.

Once we weaned the meds, lifted diet and fluid restriction and his incision healed outside of scheduled appointments he was no different from when we went in. His attitude may have gotten spunkier and he did become more spoiled probably because of the experience, but we are lucky that this two year old memory is a positive in this situation. He was not hunted by the trauma and was just as happy of a camper once he healed. He gained a new found energy, I guess near 100% oxygenation will do that to your body and energy level. He stopped throwing up upon exertion and is tough to keep up with him.  He flourished into the rowdy 3 year old that he is now. We have been so BLESSED beyond my comprehension.

I often struggle with this last part, we are blessed (especially around our heart related anniversaries)  that Jasiu is doing so well, that he has no delays, no major setbacks and others are not so fortunate. Why can't all kids and families be blessed and be able to enjoy life with their babies. I'm so happy that I have both of my kids and can squeeze their tiny bodies for a hug whenever I want and there are parents who had to lay their little ones to rest. It is just so unfair and I can't comprehend this. I guess it's not for us to understand why things happen the way they do but we are only human and often question why things happen the way they do. I thank God for Jasiu every day, but why can't it seem more fair.  I mourn for the parents that no longer have their baby, weather it was port Fontan, post Glenn or at any other point in their HLHS journey, it is so tough to see a child pass away. I silently pray for those families and continue to pray for our family that we may be blessed for as long as God sees fit.

3 years !

3 Years!

 

I can’t believe that it has been three years already. Though at times it felt like time was standing still, the reality is that it went by so quickly. Too quickly.  This past year has been a crazy one, for about a quarter of it we were dreading handing him over for another surgery and for another quarter of it we were battling the aftermath of it.  But in the end,  Jasiu proved that he can surpass all obstacles and began living his life to the fullest. Thriving really. Once he was past all the restrictions, dropped the medicine and realized that his little body is now as close to 100% oxygenated as it can be he began to show us what he is capable of. Not that he was behind on any developmental scales, but when I compare the boy we handed over and the fully healed  ball of energy and ENDURANCE, it is like a whole new world opened up to him.

 

In 3 years this boy has endured 3 open heart surgeries, 3 cardiac catheterizations, numerous echos, pokes, prods, IV’s doctor visits, you name it. We expected it all, knew it was in the cards for this boy and now we can only pray and hope that he can handle this new physiology for a LONG LONG time.

 

BUT.. despite all that what you see is a 3 year old boy that loves cars, trains, balls and sports, in all its glory.  You see a smiling little kid or a tantrum throwing little kid depending on the hour or minute, but there is no sign of “half a heart” in this boy. I would say he puts in twice the heart into anything he does. He absolutely loves his Polish heritage and loves his “ciupaga” “kapelus” and “skrzypce” he loves dancing and singing in Polish and can watch videos of the boys dancing to the point that about 50% of YouTube viewings are probably from us for at least 2 different clips. He now has a brand new favorite (thank you ciocia Ania for the introduction) which includes highlanders doing acrobatic tricks, so now we have Jasiu also doing somersaults, attempting cartwheels and standing on his hands… He can go on for hours.

 

Though he can be a stubborn, feisty and sometimes outright naughty boy, he is still so sweet, cute and cuddly as ever [even if it is mostly at bed time].  We love him to the moon and back, stay strong our little man !

 

Party at Pump it Up

 

Cake #1  - (1st picture is with Cake #2)

 

Specially hand made cake by Grandma - Cake #3

 

 

Awareness - { CHD Awareness Week }

          

Almost everyone knows that February is “Heart” month, Valentine’s Day is in February, the American Heart Association begins their “Go Red for Women” campaign spreading awareness for the #1 killer of women, heart disease. Stores are filled with red and hearts, and roses.

But did you know that February 7 through 14 is also National Congenital Heart Defect Awareness Week, spreading awareness for the #1 killer of BABIES.   Chances are that if you have been reading my blog for the last few years or are Facebook friends with me, you know, however the rest of the general public has no idea. 

This is sad because statistically heart defects are one of the most common birth defect affecting 1 in 100 babies (or 1 in 125 or 1 in 110, depending on which statistic you read, but it is still VERY common). That is a lot of babies born every day.  Heart defects range from mild to severe, but it’s still a heart defect! I have  met parents of babies with “just” a small hole in the heart and you can see and sense the same fear, anxiety and sadness in the parents eyes as Joe and I feel since the day we found out about Jasiu’s “severe”/ “incompatible with life [without surgical intervention]” defect.  It is heart wrenching to see your baby in any sort of pain, but to see them post-surgery is almost unbearable. So many parents walk this road and I as well as most of the “heart parents” I have met on our 3 year journey were just as naïve as we were before their baby was diagnosed, some of whom only found out only hours before their baby was rushed to the operating room. Can you imagine the shock, we at least had 4 months to “prepare” before Jasiu was born.   

 

Why is this important?  Awareness is the main purpose of this post. Though heart defects are not preventable, most happen before the woman even knows she is pregnant, awareness that such an issue can exist leads to asking the right questions at your 20 week ultrasound. It leads to asking for a pulse ox test before discharge from the hospital (in many states this is now required by law, including IL). It leads to more funding for research for treatment and even prenatal intervention.

 

Awareness is Key to getting the funding.  I am beginning to be active in the American Heart Association and posed a question to my contact about an awareness campaign for CHD Awareness, similar to the “Go Red for Women” campaign.  Though they are not working on anything in that magnitude yet, the AHA  is a good organization to donate. See the flyers that they sent me with information.    Another great organization is the Children’s Heart Foundation, though a smaller organization, nearly 100% of their funding goes to pediatric cardiovascular research, or Mended Little Hearts, I can go on.   Even though when you read how much money goes to research, it is still greatly underfunded compared to other diseases, there are so many great minds that are developing new techniques and new studies that they deserve equal funding.  I am not undermining cancer or other diseases, just wish there was equal awareness. Here is a piece by a fellow Heart mom, it’s worth your reading, she puts it so well. Blog: Accidental Purpose : Apples and Oranges

 

You may ask, ‘why do we need even more funding, wasn’t Jasiu’s CHD “incompatible with life” and now he and many kids like him are thriving?’.  Well glad you asked – We need more funding and research because even though Jasiu’s is thriving, the three heart surgeries did NOT fix his heart. All it did is prolong the life of his single ventricle. The hard truth, though I hate focusing on it, is that the Fontan is likely to fail. Current studies and data shows that the body does not like the Fontan physiology, his vital organs are doing extra work, they are strained and it wreaks havoc on the entire system over time.  Honestly it can happen tomorrow or years from now but chances are it will at some point and the current options at that point are medication and/or transplant. That is not a good option for many many reasons that I will not go into at this time. So we need more research because doctors and researchers are working towards other options, some options that only a few years ago we never even thought were possible but they are becoming a reality because of funding and supporters like you.  These single ventricle kids need a “cure”, a better option, and it can only be done through awareness and funding.

 

With Awareness comes funding, with funding comes research, with research comes hope, with hope comes life!

 

So this Friday wear RED to kick off and show your support for CHD AWARENESS and for Jasiu.

 

Being able to spread awareness through him is such a  blessing because though HLHS is incompatible with life on it’s own, with the help of God, great surgeons, hospitals, research and supporters like you, he is able to live – THRIVE with only “half a heart” but  as thankful as we are, we are still hoping for a full “cure” because as parents we want what is best for our kids.

 

 

Thank you and spread the awareness we owe it to all these kids battling this awful disease.