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





Little Climber and Pre-K

Jasiu barely started walking at 12 months and now two months later he is running, not only is he running, he is climbing, riding and getting into lots of trouble.  It is so good that his heart and all that he has been through has not affected him as much as we were afraid it would. He truly is right where he should be developmentally and cognitively.  He knows that he has to go down the stairs on his belly and knees and sometimes starts off in the middle of the kitchen and ends up scooting back all the way under the table instead of the stairs which makes him pretty mad because he didn't get to where he wanted, so he goes forward again and looks behind him and scoots down the stairs. We still walk behind him, just in case that he would forget and turn around or stand up on the stair and possibly get hurt but this doesn't happen often at all. He also figured out how to move forward on his ride on toys and now loves them.  He can put blocks together and says "bye bye" and waves his hands when I go to work or anyone leaves. He also gives kisses to Mommy and daddy and grandparents and blows kisses to us and everyone else. (We try not to get in too close contact with non family members) Just this week he learned that he can use other objects to get to what he wants, ie. he will use his play golf clubs to get toys he can't reach on the couch, he will bring his sister's little chairs and place them next to the couch so that he can get on it. Yesterday as I was fixing dinner I found him with that same chair next to the coffee table and I'm sure his ultimate goal was to get on top of it. Joe was holding the chair and "supervising" while I just had to get picture of this. We have  baby proofed a lot of cabinets now and have a blockade around the TV. He has already tried to fit his little foot between the slits to see if he can get higher and used the same plastic golf clubs to see if he can "touch" the TV. I tell you he is a handful, a typical boy and though it's tough always having one eye on him, I wouldn't have it any other way.



Ohh ohh mom caught me :0

 



We have a climber









He is an awesome eater now and we are so thankful. I don't even mind having to distract him to eat because he is eating and that is what matters. He could have just finished his meal and Joe or I get home from work and he has to have some of what we are eating. Also he still likes his bottles, though they haven't gotten any larger he takes them on my lap while cuddling. I.LOVE. IT.  I like to think he's making up for the lost time when he was fed through the NG and we never got to feed him in our arms for the first 5 months because feedings were so difficult.



I really hope that Jasiu continues to be as smart as his big sister. Emily is going to start her first year in English school this fall. She will  be in Pre Kindergarten for 4 year olds and she will not even turn 4 by the first day of school since her birthday is August 30th and school now starts middle of August, but she still meets the age requirement of 4 by September 1. She will be the youngest in her class and she has not attended the PK-3 because of Jasiu and us wanting to prevent her from bringing germs and sickies home. She knows all her colors, numbers and singing the alphabet with recognizing a lot of letters in Polish AND English. She also started speaking English over the last four months. We really didn't have much of an approach to teaching her English, just turned on Nick Jr. and let it go from there. We now also translate to her most of what we say so that she is better prepared for school. Speaking to me and Joe and grandparents in Polish is still a requirement because we don't want her to forget Polish. She barely started English and is already choosing it over Polish, but I think it's because is something new that she likes. She is like a sponge and can already carry on a decent conversation in English (after only 4 months !!!) Just amazing to me. When I came here from Poland when I was 9 years old and didn't speak a word of English, it took me a full year of school to learn and another full year to be fluent. It was quite emotional to sign her up to school but she is so excited. She got to meet her teacher and see the classroom the day we went. She is pretty social, not shy at all and loves doing project so i think she will do just fine. She will go 3 days a week for 3 hours. I'm sure the only adjustment we will have to make is an earlier bed time.  Since her time flew by so quickly I'm sure Jasiu's is just around the corner.

These two love each other so much and I had so much fun spending all day today with them just playing, nothing else...

These two are the best

She loves to dance

Climbing down

Superstar

More attempts at climbing

Mission : Demolition Barbie house





Details for Walk - June 3, 2012

Today I had a busy day figuring out how to register, register myself and Joe and Emily for the "Kids Dash", set up Team Jasiu and the fundraising web page, e-mails to co-workers for donations and Facebook messages for getting the information out about all the details... It's a lot of work trying to get this thing organized.. but I'm sure it will pay off and it's already proving to be so rewarding. Next year I'm starting sooner!

So here it is -

*** Sunday June 3, 2012  *** 8 am ***

*** Keeler Park 93rd and Keeler Ave *** Oak Lawn, IL ***

If you are interested in joining us for the walk (our team will be walking considering we will have a double stroller with us) you must register on active.com. Click here for the registration website.

Step 1 - Set up your e-mail address and password for active.com

Step 2 - Accept Waiver Choose   "Team Members - Register for your team" then choose  "Team Walkers - Register for your team" then agree to the waiver and type in your name to sign electronically.

Step 3 - Complete Form - you can register yourself and fill in all the information and then once you are done you can choose the option to register someone else (spouse or friend) and then you will only have to pay the various registration fees once per person. ($20 for each walker which includes T-shirt) In this step you must choose TEAM JASIU to indicate you will be joining our team, no password leave this section blank.

Step 4 - Payment (self explanatory) Note a convenience fee will apply.

Step 5 - Print your receipt (it will also be e-mailed to you). 

You will also be able to set up a fundraising website if you choose to raise funds on your own from neighbours or co-workers or you can use my link below if you don't want to bother with that.  

Kids Dash !

If you are interested in also entering your kids in the Kids Dash which will be following the 5K run/walk at around 9:30 you can do so also by following step 2-4 but instead of choosing "team members - Register for your team" Choose "Individual Registration" and then choose Kids Dash $10 (kids will get a t-shirt and a medal). You can register the kids at the same time you are registering yourself once you go through your steps 2-3 and you must sign for your kids. If Kids are in strollers they do not have to be registered for either event.

Donations !

If you can not join us for the walk and still wish to contribute you may do so by helping us raise funds for the cause.  The website to donate can be found by clicking here. From this page you can click on "Home" in the top navigation bar and it will take you to the official website for the Run/Walk and you can get more information.

Running For Hope ~ From the Main Donations website~

In 2011, over 1,400 community members, corporate partners, patients and families attended this event and raised over $80,000. We are excited to announce that the 5th annual 5k event will be held June 3, 2012. This year’s event will once again benefit The Ronald McDonald House® near Hope and Advocate Hope Children’s Hospital. We hope you will join us this year in helping to raise $100,000. Advocate Hope Children’s Hospital is the largest freestanding pediatric medical facility in the south and southwest suburbs of Chicago. The hospital offers a Level 111c neonatal intensive care unit, one of the largest pediatric cardiology programs in Illinois, and an internationally recognized pediatric hematology and oncology division. The 69-bed institution has expanded its services to families by partnering with Ronald McDonald House Charities of Chicago & Northwest Indiana (RMHC-CNI).   The Ronald McDonald House® near Advocate Hope Children’s Hospital provides a “home away from home” for families of children receiving treatment at Hope Hospital. This 16 bedroom House offers comfortable rooms where families can get a good night’s rest knowing their child is close by. The money raised from this event helps with the operational costs of the House. Thank you all for your interest and help in any way you can. It means so much to us. Let's help reach the oveall goal for Advocate Hope Children's and Ronald McDonald House.

Running for Hope 5k Run/Fun Walk

I decided to sign up Team Jasiu for the Running for Hope 5K Run/Walk.

Sunday, June 3, 2012 @ 8:00 AM

Keeler Park, 93rd St. & Keeler in Oak Lawn

I know it's kind of late ( a little over a month's notice) but I always say better late than ever and usually now with 2 kids in tow, we are late a lot :(  To my defense, I just found out about this event this Saturday and decided that Team Jasiu is on.

The donation proceeds that are raised will be used for Advocate Hope Children's hospital and the Ronald McDonald's house right next door to the hospital. You can read more about the walk on the official website description here. 

We love Hope Hospital, we are lucky to be so close to an excellent hospital with such a wonderful heart center that I feel like we have to give back in any way we can since it has been such a major part of our lives this past year.

Jasiu, Emily, Joe, my two sisters and me are Team Jasiu (so far) !

I hope to raise awareness about this event in hope to recruit runners or walkers (we will be walking) to join our team. I am in the process of creating the team website where each person will be able to register. I will post it here and on my Facebook page as well. If you can not join us for the walk any donations are truly appreciated. I think our first year we won't set an official monetary goal but see what Team Jasiu  can do. I know we have a lot of fans and supporters so we can't wait to see how much we can raise.

Stay tuned for more information.  Let the training begin...





Easter 2012

I'm happy to report that Easter 2012 was a success and we were back to our old routine and the kids loved it.

Last year during Easter Jasiu was "interstage" (time between  the first two surgeries which often is the most fragile time for a child with HLHS). Since we wanted to spend the Holiday as a family of four together and didn't want to leave either parent at home with Jasiu our family was nice enough to bring the Easter celebrations to our house. It was different, but still spent with the people we love the most.

I keep saying it over and over, but truly, what a difference a year makes !

This year we almost spent Easter at home again but for a different reason. On Tuesday night Jasiu was awfully cranky and totally not himself. On Wednesday early morning (3am) when he woke up to eat, I noticed he was really warm. I fed him gave him some time to cool off and took his temp. It was 99.5ish. Since technically this isn't a fever, and he went back to sleep no problem, I didn't give him anything until the morning to see if  it was just temporary. At 7 am his temp was 101.4 (officially a fever). During the day grandma was monitoring the temp and medicating with Tylenol but the lowest it went was 100. I called the doctor's office to let them know and to find out the right dosage of the Tylenol because the last time we were using it was when Jasiu weighed a lot less. (We were lucky he wasn't sick with a fever and haven't used Tylenol since the Glenn) I also made an appointment for the following day just in case things got worse, and worse they got! Thursday on top of the Tylenol we administered Motrin because the Tylenol was just not working. The combination of the drugs worked during the day but as they wore off the fever came back and when I took Jasiu to the doctor on Thursday after work it was 6 hours since his last medicine dosage and his fever hit 103.  It turned out that ears were clear, he had no runny nose or cough, it was just his throat, some sort of virus and we just had to keep an eye out on it just in case it got worse or other symptoms occurred.  But by Friday night he was back to himself and even his appetite increased. On Saturday he already had breakfast and bottles as usual, no fever and mood was completely back to normal.  However today (Tuesday) Jasiu's nose started running, so I think he wasn't completely over that virus, or it spread to his sinuses and Emily is now snotty as well :( ohh such is the life with toddlers.

So we took Jasiu with us to bless our Easter baskets and dressed him up in the Polish Highlander traditional outfits. Emily and Jasiu looked so cute.  On Sunday, we passed on the early morning Resurrection mass at 5:30 am since we didn't want cranky children for the remainder of the day and just attended a regular Sunday mass at 7:30 am, breakfast and brunch at the Klimek residence and then dinner at the Hyc residence with the Krol side of the family.  Emily and Jasiu got to spend time with cousins on both sides and they had a blast.

Before going to bless our Easter baskets



After blessing  at Grandparent's house




Easter day after brunch - Kids playing (story time with uncle Damian)


We are so blessed to  be able to spend another holiday as a family and outside of the hospital and with Jasiu doing so well. As I thought about the events of the Holy Week and how Jesus' mother had to witness her son's death so that we all could be saved, I couldn't help but to pray the same prayer that thousands of mothers pray each and every day "God, thank you for this day and please spare my son's life so that we may have another day. Amen."

I hope everyone had a wonderful Easter as well.

Walking Walking Everywhere

This will be really short ( I forgot to include in yesterday's post.. how could I forget !)...

Jasiu is walking !!!

He started right on his birthday and in the month since his birthday party he has been getting better and better with now being able to stand up from anywhere and not just by hanging on to furniture. He does stand up and fall on his bottom when he is quite tired at the end of the night but that doesn't stop him. He is also choosing to walk most places rather than crawl, so even he knows he's getting better and faster.. look out we will have a runner in about a month. Scary for mommy to even think about. 

 Here are a couple of videos of our little guy taking his confident steps.

The other video is of my two wonderful kiddos playing in their play room, don't mind me and asking Emily questions (you can tell her English is picking up really well).  My two silly monkeys.

(Note, I only speak to my kids in Polish so for my English only readers, sorry :(  )