Friday, June 7, 2013

Running for Hope Success !


:Last week we also participated as Team Jasiu in our second year in Running for Hope 5K. 

Let me just start by thanking all of our friends and family who have supported us in either joining our team and walking with us and those who donated or both!   It is truly amazing how people can come together and together we collected $1,755 for such a good cause the entire event raised over $115,000 and over 2,000 people participated and there must have been at least 150 #1's participating in the Kids Dash.

We all made it to the finish line in 1 hour and 7 minutes, which beats our 1hr 29 min time from last year! The weather was a little chilly and a large rain cloud was looming but it stayed rain free for the duration of the race but that didn't stop us from enjoying this day and seeing friends and family join us made it so much more fun.  I hope that Team Jasiu can continue this tradition to help support the Advocate Children's hospital and the Ronald McDonald house because we owe them so much and are so grateful to have such a wonderful hospital practically in our  back yard.  

Great Appointment

We are 7 weeks post Fontan and have been out of the hospital for 3 full weeks now and I had my first week back at the office. Life is getting back to normal.

Today's X-ray is good, blood work is good, he sounds and looks great. His energy level is through the roof and does not get winded anymore like he used to. His INR level was only at 1.3 today so we are changing the counmadin 1.5 mg 5 days a week and 2mg twice a week and see how it goes. Fluid restriction has been lifted so we are slowly going to work up his intake. Fat free diet and medicine is still status quo, we only want to change one thing at a time to make sure he know how he reacts to each step so that we don't end up back at the hospital. I'm OK, with baby steps as long as they are in the forward direction.

Jasiu also got tested for the study we are participating in on how he's doing developmentally and I'm so proud to say that in speech and fine motor skills he is testing at 28 months and gross motor skills at 33 months (Jasiu is 27 months for those who don't remember :)  I could not be  more proud and blessed that this kid is so determined to do all that he does and we have also been blessed not to need any type of therapy since he was born.  He is just AMAZING, we are so grateful to God and his entire medical team for taking such good care of him.

Next check up - Two weeks.   Hope every one's summer is off to a good start.

Happy for a great report !

Not so happy right after having his blood drawn