Wednesday, June 27, 2012

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 4th 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 27th will  always be remembered as the day Jasiu won his second major battle with HLHS !!!

Happy Gelenniversary to us !

Sunday, June 3, 2012

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.


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 :)