This little piggy ...& a whole lot of updates

I can hardly believe it... Jasiu these days is a little piggy.. not quite the bottomless pit but mostly looking for something to eat. He has started to begin to feed himself and is quite good at it.. mostly. All he needs is his "charlie and the numbers" and he will open wide and eat and eat. One of our biggest prayers have been answered and our determination to keep experimenting with food and keep introducing patiently has paid off. We are so blessed.. See for yourself.

Next update... Jasiu is quite the handyman... he even helped dad and grandpa with the swing set the kids got for Emily's 4th birthday...

Next... Can you believe my little girl will be 4 next week.. that's FOUR, I feel like she was a baby Jasiu's age just a few minutes ago and she is sooo big and smart. She is in the 95th percentile for height and weight so that makes her look like she is 5!!! Take a look :)

Finally, this Friday I had a  very special play date at our house... It was a Heart Buddies play date ! I had 5 HLHSers all that go to Hope for their surgeries and are Dr. Illbawi alumni. 

**Jasiu the youngest at 18 months - Post Glenn
**Austin - 20 months - Post Glenn
**Jonah - 2 years and 1 month - Scheduled for Fontan for October 1st.
**Kylan - 3 years and 3 months - - one year post Fontan
**Josie - 6 years - 3 years post Fontan and one year post 4th heart surgery

These 5 kiddos and two of their siblings Emily and Morgan (Austin's big sister) played so nicely together, enjoyed some pizza and snacks and the mamas got to talk in a language that a year and a half seemed foreign to me. We just "got" each other and were able to share stories and for those of us pre Fontan (which is fast approaching for all three) this was a great experience to talk and get a lot of our questions answered that even the doctors can't answer. In a heart community that recently faced so many heartaches, it was so refreshing to see these kids be so normal. It really gives a lot of hope.

Jasiu with Josie (HLHS) and Morgan

Emily with Jonah (HLHS)

Jasiu with Kylan (HLHS)

Jasiu with Austin (HLHS)

4 HLHSers and 2  big sisters (the fourth is Jasiu's but hanging out from the slide :)

(left to right) Josie Emily and Morgan

Today we went to a Polish Mass  in Indiana in our traditional Polish outfits and I think my little highlanders look so cute in their outfits (I may be a little bias here.. but hej.. it's my  blog).  Jasiu is quite the ladies man...

This little girl really liked Jasiu

my angels

Not a fun Cardiology update...



This about sums up our appointment


Today we had our cardiology appointment to see if the increase in Enalapril was working to help control John's blood pressure and help his heart muscle not work so had and reduce in size since it was discovered that  his heart has "thickened" at the last appointment in May. As you may recall we were supposed to see Dr. H after 2 months (and I made my appointment exactly for 2 months later) but it got pushed back because the doctor was out of town unexpectedly, than John came down with the HFMD and then the Dr. was out of town so the appointment was scheduled for today.  Now let me preface that I have been proud of myself that for the last 17 months I have known my child so well that and we have been so lucky that I have scheduled each of his cardiology appointments at a time that I know by the time the echo comes around, John takes his bottle and passes out and the echo is done in a nice dark quiet room while he naps in my arms. EVERY TIME for the last 17 months worth of appointments EXCEPT for today.  This unfortunate event is partly my fault and partly the staff at our clinic (and gosh I love those people,   but today they were a little slow to meet our needs).

The timing was good, it was before nap time that all the screaming in the waiting room, during vitals and all other routine stuff tired him out. By screaming, I mean from the moment we walked through the hospital door until we left with brief moments of non crying when no one from the hospital staff made eye contact or was within 5 feet of him. At the very sight of the receptionist he went hysterical. My poor kid has the biggest white coat syndrome I have ever seen or heard of.  Anyways... once they finally left him alone after vitals, I gave him his bottle and he began to pass out. From all the commotion, I forgot to remove his shirt for the echo but didn't even realize it until much later. Once asleep we got the pulse ox reading and blood pressure reading.  So I finally tell the nurse to get the echo tech in there to start the echo while John is still sleeping or else we have a lost cause, we already stirred him while we were doing the blood pressure but he continued to doze off. Well the doctor hasn't written the script for the echo before hand so the tech couldn't start, that took a while and finally by the time he came in to do the echo, I realized I did NOT take off John's shirt and he did not have a button down. I have NEVER forgotten to remove his shirt before he fell asleep and of course when I tried to remove it ever so carefully, he woke up. To say that John is a light sleeper is a huge understatement, once he woke up that was it.  The tech gave me 15 minutes to try to get him back to sleep, poked in and that arouse John and then gave us another 5 minutes which turned out to be another 15 minutes of waiting and nothing, still not sleeping and we gave up. We just got one measurement while I was holding down a screaming Jasiu holding both arms and legs thrashing and heart rate nearing the 180's (he head the leads on that told us the accurate reading) (also normal resting heart rate for John is 100-115 beats per minute) NOT fun at all... Ohh and from all the screaming during the middle of the echo he coughed and threw up all over himself, the room and me of course, (the only unscathed party was the tech) so for the remaining hour of the appointment while they finished the echo and the doc read it and we talked ... I smelled like puke... again  NOT FUN !!!

SO the million dollar question was if the doctor could tell anything from the echo and pictures that we were able to get... yes... sort of... The heart muscle is still a little thick, thicker than they want it so we are increasing the Enalapril one more time to now 1ml 2x daily in hopes of helping it as well as the blood pressure that was on the high side (and it was taken during sleep, so it wasn't artificially high because of his strenuous crying or anything like that).  Next appointment in 4 months and I told the doc to already write the script for that and I will remember to remove his shirt and hopefully we don't have a repeat of today, EVER ! Also, the doctor said that we will begin talks and preparation for the Fontan at our next appointment, which will be based on that echo and most likely will require a pre Fontan catheterizing, which I can't imagine will be any fun for us or for Jasiu. My only hope is that in 4 months he will be a little older and by the time of the cath a little wiser and maybe not so against the hospital, but that's probably the hopeful me talking, the reality is that who knows when he'll grow out of it, if ever.

That's it for now, we will continue to pray that the medicine is working  that Jasiu will stay out of trouble and that we can and will try to enjoy our summer as best as we can.

HFMD ?! & Vacation Update

So I finally have some time to blog about our recent activities and instead of all happy updates, I have to share that somehow Jasiu contracted Hand Foot Mouth Disease/ Virus (HFMD).  It's no fun... I think the shirt says it all.

Yep, he was pretty miserable for the first two days starting on Wednesday and took him to pediatrician on Thursday (before our scheduled cardio appointment) and the doctor confirmed it that it was HFMD. This is a virus that is pretty common in toddlers and kids but somehow I have not heard of it besides a few heart kids I have gotten to know in the online heart mom's group.  There is not much that can help because it's a virus so no antibiotic and it causes blisters in the mouth (in and outside) hands and feet/legs.  They don't itch but do hurt when they are pressed and the open wounds in his mouth and on the tongue I was told hurt, so naturally his appetite has gone down but he still continued to take his bottle without any problems, so from what I hear we got the mild version of the virus. Besides the fever at the beginning and the increased irritability he seems much better. He does want to be carried more because of the blisters on his little soles of the feet and under and on top of the toes. It sure doesn't look comfortable. Poor little guy. Ohh and all weekend plans have been rearranged so that one of us is at home with Jasiu all weekend because it's contagious. Currently Emily is still not showing any symptoms. The pediatrician said his whole body is working so hard to keep the ticker going that all else including his immune system are much weaker. He has been sick now twice in two weeks. We have no idea where he picked it up but it may have been at our 4th of July traveling. Lot's of public places and a very active toddler equals many a many opportunities to pick up germs and it's hard to keep him in the stroller at all times, plus a hotel room which I apparently didn't wipe down enough.

On 4th of July, one of the hottest Independence Days in the Midwest EVER, we headed out to Holland Michigan. (when I booked the trip the weather wasn't projected that far out ) It was a nice ride and we timed it just during John's nap which was great since he is not much of a traveler.  Though we didn't get to walk around the shops too much because it was SO HOT, the town was charming and we will definitely come back.  The kids liked the fireworks for about 5 minutes and then they were over it, but they were really nice.

They did LOVE the beach though. It was a hot day but the cool Michigan Lake water was very refreshing.  Then from Friday through Sunday we spent back at Bass Lake and did a little boating, beach and just relaxing. Besides a small incident and Jasiu's cold that he caught on the first day there that caused him to puke all over the hotel in Michigan over the two days we stayed there it was a very very nice getaway.  We are really lucky that the kids are so easy going. :)

Family Pic

 

Her Posign face



My little Firecracker



Dutch Village

Beach Day

Silly Girl

This is Emily waiting to be seated for lunch

This is Jasiu waiting not so patiently

True rays of sunshine

Jasiu not so find of his life jacket (the smallest we could find)

Finally, there is no cardiology update because once I called the clinic to tell them that John came down with the HFMD they told me not to show up for at least 2 weeks, OK, but in 2 weeks Dr. H won't be there so we have an appointment in 3 weeks. It has been now moved up twice and it is really bothering me because the reason we needed a May appointment is to see if the Enalapril increase in dose was working for his blood pressure issue and I'm getting nervous.  So let's pray that the medicine is working, visibly he seems fine but you never know with the heart.  So next appointment date is August 2.



Glenn-iversary & Weekend Gettaway

Today we are one year post Glenn. What a long and short year it has been. If you would have told me that one year from then my child will be running like a little tornado and getting into EVERYTHING, mostly trouble I would not have believed... But here we are and we are doing wonderfully !!! We really couldn't ask for more.

I remember like it was yesterday and I don't think Joe and I will ever forget especially since we are reminded of it every single day. Every day that I give Jasiu a bath or change his clothes I am reminded of that dreadful day we had to hand him over again and trust completely that God will guide the surgeons and his medical team to do the right thing and successfully help our son live with what he has got, a half a heart. To this day this whole concept still amazes me, how can a person live like this and do so well, Jasiu must be so strong and the body and heart is an amazing thing.

As this day was approaching I was thinking more and more about his physiology and how differently his body has to work and was wondering how he does it, how he feels…  and I really don't know if I will ever  ask him how it feels.. does it feel differently having his circulation, does he feel something isn't right inside... I guess by the time he would be able to tell me or even now if he could talk, he doesn't know any different, he's always been like this, but I will always wonder, if I will ever bring myself to do it, I don't know. I think it would be so hard to even muster out... but also I know as he gets older he will also ask me why he was born with his heart broken and I still haven't figured out what i will tell him when that day comes. I did begin to explain it to Emily since she has been asking about it more now when she sees Jasiu 's scar but I only tell her in very simple terms now. Now I'm just digressing, back to Jasiu.

Besides his recent issue with the high blood pressure, we have had a fairly smooth ride after the Glenn.  The recovery in the hospital was quick and the toughest part was the two weeks following with managing his pain. We did it decently I think an with minimal discomfort as far as we could tell. The full month post Glenn, Jasiu was still on the NG and though he gave us false hope immediately after the surgery with his bottle eating ability. We finally pulled the tube out after a month and struggled with feeds for the following few months. I think we were mostly dream feeding for about 4 months until Jasiu realized the bottle wasn't all that bad. I still think that he hated the formula, ALL formula and that's why he fought the bottle so much because as soon as we switched to whole milk he took the bottle fine to this day. The pediatrician told us we should pull the plug on the bottle but with all the struggles we have had I will pull the plug on the bottle when he goes to college, should he continue to drink his milk that way. He did really well with baby food and table foods and is now a good eater, with distractions that is, but all and all we are doing awesome in the eating department considering our rough beginning. In other developmental areas after the Glenn, Jasiu did great as well, he began turning over on his belly about two months after surgery, than started crawling around 10 months and was walking at 12 months. With the fact that he had a lot of physical restrictions for four months of his short little life thus far, the fact that he’s on target with his age group developmentally is such a blessing, we couldn’t be happier for him. Now we are running everywhere, I swear I think babies have the need to run everywhere as opposed to walking. When he’s not sleeping he’s a constant ball of motion.ALL.THE.TIME. And Trouble should have been his middle name!

I will give you a glimpse into his troublemaking skills whit a synopsis of our weekend trip to Indiana.

Last weekend we went to our uncle’s lake house in Indiana, the ride there is usually fairly short 1.5 hours and Emily could take it like a champ even at Jasiu’s age… Jasiu… that’s another story.. My mind was spinning out of ideas to keep the kid occupied, every distraction lasted about 10 minutes and then on to the next, then add the stop to eat, change chlothes (threw up big time long strory), bathroom stops, etc. and the ride was about 3 hours long from A to B. We get there and not more than half hour he brakes the screen door by pushing his hand through it, 10 minutes on the pontoon and he bumps his head and gets a bump above the eye, while walking past the Tupperware cupboard opens it and finds the only glass in there and shatters it all over the floor, and then tripped into the bushes and got a scratches between the brows right before we were about to pack the kids in the car for the ride home for good measure! All and all a very successful weekend.  We knew that he loves water, bath time is his favorite but the lake was like a dream come true for Jasiu. This kid can be a total beach bum if it wasn’t for the purple lips and feet….

The water on the beach was very warm actually and Emily, maybe because she was moving a little bit more than Jasiu (ok. More like running around and splashing the entire time) she had no issues, lips as pink as they come but after about 45 minutes and once a slight breeze came we noticed Jasiu’s lips were turning purple (which I knew would normally happen for these heart kiddos with poor circulation and different oxygen levels) but when his foot pooped out of the water and it was a few shades lighter than a blueberry I got scared and took him out of the water. I thought he would fight me on that decision but the kid started shaking in the towel to the point I got so scared that something was really wrong, but then he dried out and his color came back to normal.  This is just another reminder that Jasiu needs special care and attention and doesn’t seem fair to him. Since it was slightly overcast he also was not wearing his swim shirt,  we slathered the sunblock anyways though. His scar was exposed and to me it was a constant reminder of this kiddo’s battle that he fights every day.  Besides the scar (and the one instance of turning into a blueberry) no one could tell anything was ever wrong with him.



first time at the beach




Played here for at least 45 minutes





a little construction play after the beach




swimming (with mommy)




my little fishies



So the weekend starting with 4^th of July we are trying to do this again, but this time a little farther and taking the kids to Holland, Michigan for a few days.. it should be interesting.

But for now June 27^th will  always be remembered as the day Jasiu won his second major battle with HLHS !!!

Happy Gelenniversary to us !

5K Success

Today was our Running/Fun Walk for Hope . It was a 5K (5kilometers which is 3 miles) and we finished it in about an hour and 15 min.  We really took it easy and most of Team Jasiu just strolled, literally very casually. We had a total of 5 strollers !!! Team members aged almost 3 months to 30's. We are so happy that it was such a success considering it was the first time I tried to organize something like this. There were a few serious runners/walkers who finished in 35 something minutes, my sister Agnes, Kathy G and her husband finished in about 45 minutes. The rest of us strolled. Our superhero was quite a trooper considering he gets impatient and bored easily. All the commotion and people around him kept him occupied for about a mile... than I walked with him in my arms for a bit, than Joe, than Cheerios, than the water bottle, than the cups that they were passing out with water (which Jasiu scraped the wax off and tried to eat it with his teeth).. etc. It was quite fun. I can't wait to do it again. Next year I will be more organized and get matching T-shirts for everyone. (and I think I will try to run)

But most importantly, we raised $1,442, for such a good cause. All proceeds benefit the Advocate Hope Hospital and the Ronald McDonald House right here. We benefited from each of these and couldn't  be happier to be able to give back to this great place that gives us so much hope for a better future not only for Jasiu  but for all patients and their parents.

THANK YOU TO ALL WHO DONATED, I CAN'T STRESS ENOUGH HOW MUCH THIS MEANS TO US, THE MONITARY CONTRIBUTIONS TO TEAM JASIU AND THE PEOPLE WHO JOINED US.

It really shows how much lives Jasiu has touched and that we are turning something negative into something positive. He is such an inspiration and a real Super Man that we all can learn from him and draw inspiration from him.

After the 5K, Emily and her cousins participated in the Kids run (well they did the toddler run which lasted all  but 30 seconds) They got medals and Emily is so proud of her medal she's wearing it to bed tonight. Too cute. She knows that the hospital is where Jasiu gets his heart checked and fixed and she is beginning to understand so much more.  We had breakfast at grandmas and then we came home and all passed out for about 2 hours (Jasiu was out for over 3 hours).



Starting out



over an hour later - crossing the finish line



Super Jasiu -



Ciocia Kasia running with the toddlers

Our #1 Girls

Proud  Big Sister :)

So Blessed yet still So Unfair

I have to start out like this... we are so blessed to be where we are and couldn't be more happy with Jasiu's progress. This weekend especially I felt just incredibly blessed how happy, spunky and ALIVE our little warrior really is. We had a weekend full of parties, two big 1st communion parties (one Saturday and one Sunday) and a 90th birthday celebration of my mom's uncle, we all call him Grandpa (he is the one who said the blessing  before our wedding 7 years ago).  Jasiu did wonderfully, took a nap before the Saturday party and was completely ready to go - smiley from ear to ear. When we got there and he saw the hall and the band playing, his eyes just lit up he was so excited and curious the amazement in his eyes was breathtaking. He is just so aware of the world around him. We managed to get through dinner fairly well and than the "dancing" started. He just tore up the dance floor - all by himself he went and danced and danced and danced, waiving his arms, and "dancing" in circles, sometimes bouncing his knees. Everyone was so amazed with his energy and how he wasn't afraid of the adults (probably giants in Jasiu's eyes) dancing all around him... ohh no he wouldn't dance on the sidelines, he needed to be on the middle of the dance floor.  See some videos below of just what I mean. Personally I think he gets his moves from his daddy :) When he wasn't dancing he was running after the other kids back and forth in the hallway. And most of the party he was in motion.

However, all that said, it is still so unfair, it's unfair that this child despite his biggest determination gets tired and winded so quickly. One song and I noticed he was out of breath, he kept wanting to run and was falling probably from tiring out. I would dance with him in my arms and he wanted to be put down. It breaks my hart that I had to pick him up and keep him from something that he wanted to do that most kids his own age can do for hours.. run around like crazy toddlers that is. .. without having any limitations.  One song and I noticed that he was so winded he was coughing uncontrollably.. we rested for a bit, against Jasiu's own will and again barely one song and same thing... I felt so bad that I didn't pick him up sooner to take a break that when he finally calmed down he began caughing again to the point he threw up (in the hallway, thank goodness and not on the dance floor).. but still it's so unfair that things he loves doing have to be halted and affect him negatively because of his heart and we can't do anything about it.  Despite all this after I cleaned him up, what did he want to do?... put on a happy goofy grin and keep going, but I called it quits and we headed home (mostly because we were both puke Stinky :(  ) I know life in general is not fair and I really shouldn't complain but for Jasiu it just isn't fair and I already think about the day I will have to explain it to him. Now seeing him like this makes me think that he will want to do all the things he may have restrictions on and then we'll have to cross that bridge when we get there. Just Unfair because from the outside he looks so "healthy" sometimes people don't even realize why I do what I do for Jasiu's own good.

Today again, we had the two parties and he was all smiles, giggles and dancing and though you can't tell from just looking at him, I know this kiddo is struggling. But God gave him such will power, energy and determination  that I hope he can soon learn his limits and Jasiu won't be mad at mommy for stopping his fun occasionally so that he can catch his breath.

Now for some videos of the fun we had this weekend. ( I have to end on a happy note.. after all we have so much to be thankful for and so many blessings.

Cardiology Update

We had a cardio appointment today, the first one in 4 months ! In pure Jasiu style, the night before he was running too fast and tripped in Emily's room before bedtime and met her Barbie doll house face first and landed a pretty decent scratch on his chin. Nice ! My heart baby is one of the most rugged kids I know, this kid has more bumps and "accidents" than his sister and we were supposed to keep this one on a closer watch... but it's not working, he's just too fast (we were both two feet away from him and still), I digress...






We had our normal 8 am appointment as I like them (first appointment of the day = no waiting). We barely walked into the reception/waiting area and Jasiu's bottom lip started quivering and tears were rolling :(  He calmed down a little while they got our room ready and then we were called back and it started from 8:10 to 9:15 Jasiu was crying hysterically. All through his weight/height check, pulse ox, respiratory and blood pressure. He cried so much that hour that now his voice sounds so hoarse as if he was screaming all night. We saw the nurse practicioner for a while and it was as if his light switch was just turned off, he liked her (finally omeone he liked there!) more specifically he liked her badge, pager and every other thingy that he was interested in, but he wasn't crying, he was showing off his walking skills and how friendly he is, he even danced wiht our Elmo. She got our history since our last appointment and informed us that we won't even talk the F word until 6-9 months from now and that was it. Next the therapists came but we were already on the list for echo so we couldn't get out of line to do therapy stuff so we only saw them for a minute and then the echo tech was ready for us.  Rick, as always was so calm, gentle and likeable that Jasiu liked him too, well... until he saw the echo wand... then he got a little angry, uncofortable and just uncooperative. So we tried our old fashioned way (mommy holding Jasiu in her arms the entire time). Well it worked, he was calmer on  my arms, took his bottle  and began drifting off. My master plan still worked. 1) schedule first appointment 2) tire him out during vitals and all other items 3) hope that he falls asleep during echo. The remaining 30 minutes of the echo were great and Rick took great and accurate pictures.

Passed out during his Echo (pic taken after it was all done)

The next part I wasn't expecting, Dr. H came in to discuss the results of the echo. Instead of the "everything looks great see you in 4-6 months"  we got " we have to try adujusting his Enalapril because his heart muscle is thickening most likely because he still has high blood pressure and his heart is working too hard" Basically he explained it his heart muscle is thickening same as any other muscle would if you were lifting weights heaveier than you should and your arm muscles grow, however in the case of the heart we don't want that, we don't want his heart larger than it should be.  He didn't say this is extremely bad and it's a similar situation we were in when we were originally put on Enalapril his heart went back to normal after we checked him two and then four months later after the medicine began doing it's job controlling the blood pressure. But instead of outgrowing his dose and weaning off, we must increase his dose because his current is now too little for his body weight. So we will go to 0.6ml 2xD (twice daily) for two weeks and then to his required 0.75 ml 2xD and recheck him in two months. So we will have cardio again in 2 months  and another echo :(  It's not completely horrible news since a lot of kids with HLHS are on BP meds and it's something we can control but it's not what I was expecting.

Other than that, heart function looks good, his Glenn looks excellent and the regurgitation (flow from lower chaimber to upper caimber is somewhere between mild and medium but the doctor thinks that this may go back to mild once we get BP and heart muscle under control.  

So all in all we didn't get terrible news, just a little maintenance changes. Though Jasiu behaved better than expected mamma still needed a full glass of wine this evening to relieve some stress that built up all day today.





The stroller is his safe zone, and that is the hospital TV remote