Team Skyler!

Yesterday was the most amazing day ever!

As many of you know, yesterday I competed in a 5k race to raise money for Children's Hospital Boston Pacemaker/ICD Camp program. I am happy to tell you that the race raised 18,000 dollars (1500 or so from my family and friends) with more still being donated! It was truly a successful day in every way imaginable.

Team Skyler! was recognized by so many people. As I was running I had people I didn't know yelling out "Go Team Skyler!" Even the Hull Television reporters said, "Team Skyler Rocks!" on their Facebook page. (I'll post a link once they get all the footage up on the site.) So what made Team Skyler! so magical? Well, picture a group of about 20 people wearing Team Skyler shirts, cowboy hats, banners, and tutu's. Then picture a wagon decorated with hearts, butterflies, ducks, ribbons and beads. Now picture a radio blaring the song "we got the beat". And then imagine Sky being pulled in that wagon by my sister and tossing out Mardi Gras beads and bubbles to all the onlookers. Yup, we stood out and it was amazing.

Skyler was the bell of the ball and she enjoyed every second of the day. She met the people that run the camp and has decided that she does want to sleep over now. Why? Because crazy things happen at that camp, they actually hand out rubber duckies and she doesn't want to miss out on that! She met a funny clown who have her a hula necklace, sky then gave him a beaded necklace... it was cute. I embarrassed her (and probably myself) when I decided to get up and dance with the belly dancer. We all turned a little red with that one! She even won 2 raffle prizes! The kid couldn't have had a better day!

So the dreaded 5K race that I trained for.... I wasn't sure how I was going to do with that since I only has a few weeks of training. My goal was to finish it, not vomit, and not come in last. I am happy to report that I succeeded. Each time I felt like stopping and walking I just simply looked down at my shirt where I had written the names of all the heart kids and angels I know. They kept me going! I came in 132 out of 257. I was 28 out of 62 in my age division and my time was 31.59 min. Ok, so it wasn't marathon time, but I was super pleased! (mostly because I didn't vomit, but I mentioned that already)

Thank you all who contributed to making this day so special! We appreciate everything you have done and continue to do for us!

I am posting a link to my facebook photo album. Hopefully you can see the pictures.

http://www.facebook.com/album.php?aid=387741&id=599733760&l=6f80b161e9

Todays news

I'm going to make this quick because I have to get ready for class.

Sky had another cardio appointment today. I was expecting to hear her heart function had decreased and that she'd need surgery.... I was wrong. Sky had another great echo today! Her heart function remains normal as does the size of her heart. The plan is to go back in June or July for a repeat echo and go from there. If her heart is still normal we'll wean her off her meds, if not, we'll talk about surgery. Her EKG is still very abnormal, showing a bundle branch block. What that means is that as the electricity runs down the "wire" to the ventricles the right side gets the "electricity" first, followed by the left. They should receive the signal at the same time so that the ventricles can pump together. The weird thing is that even though her EKG shows a block, her heart does not. The ventricles appear to be contracting at the same time.

My take on this? So glad you asked.... I think the ventricles are probably not beating at the same time but they are off by such a minuscule amount that the echo can't see it. Eventually the heart will tire and the time between the contractions will start to show. She'll need a pacer then. However, that is just my guess and not something I have been told. Dr. Blume feels that sky probably isn't cured. She does, however, think it's possible she may not need the pacer or meds and that her function could stay normal. The only way to know is to try to wean her off everything. Why put her thru another surgery if she doesn't really need it? Or why do it now if she can wait 10 years?

On another note.. Thank you all that donated or signed up for the walk! I saw Ligia today, she is the nurse that is trying to raise money for the camp and the one organizing the race, and she said I was a "champion". She said I had so many people donating or racing in honor of Sky! She thanked me for everything I've done.... I couldn't have done it without all of YOU! If you haven't signed up for the race it's not too late. See the link in my last blog update.

Ok, off to school I go!!